Tuesday, November 3, 2009

Lynn's Story

I am a four year breast cancer survivor. I discovered my lump on my 50th birthday. What started out as a scary day has turned out to be the best thing to happen to me. Yes, for me breast cancer was not a bad thing. My husband Christopher and my sons Ryan and Avery have been very supportive and have worked with me for the past four races for Susan G. Komen for the Cure. I have had the honor to meet and have some of the best friends you could ask for because of this—survivors and co-survivors. I decided to make this a postive and only look for the good that has come, and will continue to come, from this. I don't discuss my breast cancer in medical terms. I will not allow myself to be defined by the medical terms of my diagnosis. I am Lynn Hall first, wife and mother, then cancer survivor. I have been a Susan G. Komen volunteer for 4 years. I really believe that this organization has assisted in my survivorship. So volunteering for them is my way of saying thank you.

Life can be really good after breast cancer—just ask my family. They are the reason I continue to be positive and happy. I love them and am very thankful they are my co-survivors.

Tuesday, September 15, 2009

Drum Out Cancer


I read "Laura's Story" on the Phoenix Woman blog and was compelled to type about my own story. I was diagnosed in February 2009 by my first mammogram. Neither myself or the medical professionals could actually feel the two small tumors that were in my left breast. This is exactly the opposite of how Laura was diagnosed and I felt the need to say that I'm grateful for however any of us get diagnosed. At least we're AWARE. I went through successful surgeries in March to remove the tumors but found malignancies in the sentinal and one other lymph node so it was determined I needed chemo before radiation. I had two other procedures: one to remove more lymph nodes (ALL were clear) and one to add the ultra life saving chemo port. Since I was going to be going through months of toxic stuff in my veins, I opted for the port and found it to truly be life saving. I am proud to say chemo DOES end and radiation is seemingly a breeze.

I am grateful to have been diagnosed at this time in breast cancer research and have truly benefitted from so much that is known. I have a 93 year old Aunt who is OUTLIVING her current breast cancer. She is a 40+ year survivor! She was originally diagnosed at 51, had a mastectomy, had a recurrence years later, had another mastectomy and endured chemo and is STILL able to outlive breast cancer because of her medical miracles.

I HAVE HOPE, it is my Aunt Mary.

As a local musician in Phoenix, I have been designated the Honorary Race Chair for the Komen Race in Phoenix to be held on Oct 11th. Our team is drumoutcancer.com. It has given me a platform to inform others of the importance of early detection. Outside of my job of standing at the edge of the stage, I have always lived my personal life in private. Being diagnosed with breast cancer from my very first mammogram made it clear to me I had opportunity to reach others by sharing my story. It is groups like Susan G. Komen and magazines like Phoenix Woman who help in the fight to END breast cancer by involving those of us in races and articles. (side note: thank you for the article on me and my involvement with Komen Phoenix). Keep up the good work in reaching out to all. It does give us hope that there will be a cure.

Illuminating Awareness in the Fight for a Cure

October is Breast Cancer Awareness Month, and this year marks the third annual fundraiser for the Arizona Institute for Breast Health (AIBH), The Pink Light District. The AIBH is a non-profit organization providing education and support to newly diagnosed patients about their treatment options, completely free of charge.

Now through Oct. 31, valley residents will be able to show their support of the AIBH by sponsoring pink light bulbs to be placed on the Canal Bridge located in downtown Scottsdale. Each light bulb is $25 and will serve as a representation of the strength of a survivor, the memory of a loved one, or a personal struggle with breast cancer. The Bridge, which links the Scottsdale Waterfront to the Old Town Scottsdale, will be lit during The Pink Light District Ceremony on Thurs., Oct. 1 at 7 p.m. at Olive & Ivy restaurant and stay illuminated throughout the month. All donors will be recognized on the AIBH website in their Pink Light District Honor Album and a personalized Tribute Card will be emailed to the honoree(s) designated.

This year as an added distinction, AIBH will recognize one individual who has made extraordinary efforts in the fight against breast cancer. Now through Sept. 15, AIBH is accepting nominations for The Pink Light Award. The recipient will have the honor of flipping the switch the night of The Pink Light District Ceremony¸ transforming the Canal Bridge into a symbol of hope in the cause’s signature color. To nominate a brave advocate for breast cancer awareness for the Pink Light Award, please go to www.thepinklightdistrict.org.

Julie Robinson, AIBH Board Member and President of corporate sponsor Jani-King Southwest, hopes to showcase the exceptional strides exceptional individuals in the community are making towards the cause. “It is estimated that more than 190,000 women will be diagnosed with breast cancer this year, 3,900 in Arizona alone,” notes Robinson. “With these kinds of statistics, it is imperative that there is a huge amount of community support.”

Robinson adds, “This is a simple and powerful way to raise breast cancer and breast health awareness – and hopefully become one step closer to finding a cure.”

For more information about AIBH, please visit their website at www.aibh.org.

Thursday, August 27, 2009

Laura's Story

I am currently going through breast cancer treatment and I would love to share with your readers all that I have learned since being diagnosed on July 16.

It has been a roller coaster ride to say the least, but I am also staying positive and just taking it one day at a time. I am going in for my second surgery this Friday as they found another area in my breast that still has cancer. I am trying very hard to save both my breasts, and I think that is doable, but it is only because I have been vigilant about learning all I can so I can make the right choices for me.

What scares me the most is that I have absolutely no history of cancer in my family. I also found the tumor on my own and it did not show up on a mammogram and barely an ultrasound. It wasn't until I had the biopsy that they knew for sure I had cancer.

So what does that say for the women who go in every year for their mammograms and come out okay? Is there something lurking in there that they can't feel and the mammograms can't pick up? I am not saying that they are not important to have, but I think we need to do more.

My entire story is posted on www.caringbridge.org/visit/lauracapello if you want my entire story. Although I am still going through cancer, I already feel like a survivor and I hope in the future I can be of support to other women going through this journey.

Thank you for the opportunity to share.

Tuesday, August 11, 2009

Breast Cancer Survivor Strives
to Inspire, Help Others

by Sally Cashman

“When a forest burns down it can come back greener.” I believe in this now more than ever before.

I was a healthy, happy 46 year old with a wonderful marriage, two awesome teenage sons, two dogs, a successful business and was deeply involved in the community. I never would have thought I would be “that” person to be struck with this disease. But, why not? Breast cancer knows no boundaries. After five surgeries, seven weeks of daily radiation, 16 months of emotional and physical ups and downs and a Google map of scars, that person is healthy, happy 47 year old me. I've never posted my story publicly, but we all should. By putting it out there, you are helping those women who may someday face this journey. They need to know what you’ve been through and that you’ve come back stronger. I think they call it inspiration.

My husband had lost his only brother in February last year at 45. Our family was reeling from this loss; it was really dreadful. Then in April it was my routine annual mammogram, which I have thankfully been getting since I was 35. I was in there a long time, longer than usual. They had found a suspicious cluster of microcalcifications; some can be normal residual from milk, but some indicate the presence of ductal carcinoma in situ, or DCIS. After a very unpleasant "stereotactic" biopsy, my diagnosis was the latter.

Lumpectomy #1. I had a wonderful surgeon, Babak Rashidi, who assured us this was early stage, non-aggressive, and restricted to my ducts—meaning it had not spread into my breast tissue itself. This is how they handle this type of breast cancer: they remove the area of concern without radical surgery. When the margin came back positive for DCIS, he needed to go back in and get a little more, so that he knew he had a clean, non-cancerous margin.

Lumpectomy #2. 10 days later the nursing staff asked me why I was back so soon. One more minor surgery and I'd be finished. Rashidi called with the good news: the margin on the second was clean and I was now free to go meet with an oncologist to plan the next steps.

Radiation. It's often protocol post-lumpectomy to insure that any remnants of DCIS are killed off. We met with Farley Yang at Virginia Piper Cancer Center and scheduled 37 sessions of radiation to the left breast every morning at 8:30. What a way to start off your day. No pain, not even any discomfort. It was just scary and sad because all these people who went there every day like me were really sick. I never thought of myself as sick during this whole process because I hadn't been through anything compared to them. The last day in July was session 37. I thought I would feel relief and closure, but in a way I was cast out on my own. I was going to miss these great people who I had seen every morning all summer. It was much more emotional than I had ever anticipated.

Tamoxifen. Another piece of protocol, and one more piece of insurance. This breast cancer drug was prescribed for me and I began taking it right after radiation was over. Side effects are generally negligible, but I am a statistics buster, so if there were side effects to be had, I probably would experience them. I hate taking drugs for this very reason. By September, menstruation had come to a screeching halt. Some might think this is a welcome change, but it came with brutal soaking night sweats and all the other garbage that comes with menopause. Tamoxifen is an estrogen blocker, given to breast cancer patients to minimize the hormonal feeding frenzy by potential breast cancer cells. Oh well, I was going to hit menopause anyway, just not so intensely.

Now, I really was done. At our annual Gala at my son's high school, Notre Dame Prep, I was on top of the world. I had dodged a major bullet and chaired this awesome event that had gone off without a hitch. The fall was great, with holiday parties and Christmas celebrations. At the end of December, I decided to get my follow up mammogram instead of waiting until January (so I could avoid an entirely new insurance deductible). Andy and I went to SMIL on New Year's Eve day.

I sat in the hall, waiting, even longer than before. 2 1/2 hours of films, ultrasounds and asking my mom for help. I had lost her in 1996 to a brain tumor, and she went through so much. I needed her more now more than ever. Poor Andy was beside himself waiting for me. Finally, they told me he could come back to the darkroom with me so we could talk to the radiologist. After nearly five months and all the radiation, they saw four areas—this time on the right AND left—that they wanted to biopsy. They were the size of sea salt crystals. How could something so small create such a mess?

My oncologist called within an hour after I got home. I was told consult with my surgeon again. This may require a different plan. We visited Rashidi and got the straight scoop. There were no more lumpectomies to be had. We could biopsy the right breast, but then what was the likelihood of this coming back positive again and again? This early stage cancer could potentially turn into something much more serious. This was no time to be vain or silly. In my mind the decision was already made. The longest day of my life was waiting for the results of the CT/PET full body scan—which is mandatory prior to surgery. They had to make sure there was no invasion of the cancer to any other tissue in my body. When I got the call, I was beside myself. No lymph node invasion. I really had caught this in time.

Bilateral Mastectomy. Wow. God bless my husband, my family, my friends. I couldn't have gone through this without their constant concern, love and support. The next thing I had to decide was whether or not I was going to get reconstructed. There was no hesitation. Insurance would pay for as many surgeries as necessary, and frankly, I couldn't imagine just ribs, skin and scars for the rest of my life.

I have many friends who have had augmentations. I always said that plastic surgery was never in the cards for me. Yet, there I was, meeting this incredibly poised and lovely doctor who put me at ease from the start. Dr. Trojanowski. I knew I didn't want a celebrity boob doctor, and I needed someone whose specialty was “making a silk purse out of a sow's ear,” as my mother used to say. She told me reconstruction would be difficult on the radiated breast, due to the high levels of damaged tissue, muscle and skin. The process would be long and arduous, not to mention uncomfortable. After that meeting, we scheduled the surgery for January 26th. She and Rashidi would work side by side, him removing my breasts and her installing the tissue expanders and closing me up.

I cannot lie. The pain from this surgery was intense. When they put in the tissue expanders during the same surgery, the pectoral muscles are completely cut away and these uncomfortable Tupperware lids are put in empty. They sent me home with a lot of drugs and drains coming out of my breasts, which needed to be emptied of post surgical fluid every few hours. My sister Ann and my husband Andy were my saviours. My house looked like a florist shop. My friends came from school and from the neighborhood for days upon days with meals and flowers and nothing but love. What a gift.

Over the subsequent three months, Dr. Trojanowski would see me weekly to slowly begin the expansion process by injecting saline into the ports. Over time my tissue would stretch to allow the placement of permanent implants. The ultimate boob job! So we s-t-r-e-t-c-h-e-d as much as we could. My initial mastectomy scars were looking pretty good, but my left breast was not taking the fills very well and was looking tight, shiny and red. I was in some very significant pain all of a sudden due to radiation. She told me the only way we would be able to get any kind of quality results would be through another surgery that migrates a section of my back tissue, skin, and latissimus dorsi muscle, moving all of it to my breast without ever removing it from my body. That was the craziest thing I would ever hear.

Latissimus Dorsi Flap Surgery #4. In April, Trojanowski worked her magic. I went into surgery not knowing if she would even be able to perform this "flap" because the condition of my breast was so bad and frankly, until she got in there she wouldn't be able to tell. The process is incredible. It's like the virtual cut and paste: the concept of healthy tissue from another part of your body helping to build a breast and hopefully making the surrounding radiated tissue get better. Wow. During this same surgery she was able to switch out the expander in the right breast with a permanent implant. One-stop shopping!

This is where my Google Maps come in. My right breast had a straight mastectomy scar. My left breast had a very interesting elliptical scar, which is actually my back tissue. I had a 7 to 8 inch boomerang scar on my back. But the surgery was successful. The lat flap took beautifully and gave me instant relief from the painful tightness I had lived with. And my right breast was, well, pretty nice. It's all about progress. I now had another expander in the left. With the lat flap done, Trojanowski would continue to stretch the left to get it caught up with the right. Expanders are definitely not fun, but I was so drastically improved from before this surgery. I didn't even think the post-op recovery was that bad. I was healing on both sides of my body.

Almost done. July 1, just last month, Trojanowski finally replaced my left expander with a permanent implant. Surgery #5. I have two breasts again. No nipples, but maybe I'll get those for Christmas. That is an entirely separate topic for another submission, and it involves minor surgery and tattoos. So I'll have fake breasts and tattoos—the envy of many women, right?

Through all of this I was inspired. By people who touched me and people I talked to who had been through this. My doctors were amazing. I have now cancer-free. And now I want to take this experience and give back.

The BAD GIRLS. I have formed a Breast Cancer 3-Day Team called the BAD GIRLS. You guessed it. That refers to my breasts—when I first had my mastectomy, I couldn't look. So I asked Andy to. Well? He said, “Well honey, those BAD GIRLS are gone.” So that was the birth of our team name. I have seven other amazing women, and we have raised nearly $10,000 against our goal of $30,000.

All of this time has empowered me. I dress like I want to. I am not a victim, I am a survivor. I am not afraid to talk about my experience because it is a reality that one in eight of us will face. I don't want these girls to be afraid or to think it's the end. I got through this by maintaining a positive attitude in very dark times, and by making it a goal to keep my life as normal as possible. Now I can take this experience and make it mean something for someone else. I know the ins and outs of what you need, what will help, and what you may deal with both physically and mentally. You need strength and encouragement to get through it. Most importantly, you need to take charge of your health. Be responsible, and don't be in denial. Denial chews up time, and if you have a reason to take action beyond your annual mammograms, don't walk away. Time can be cancer's best friend. We don't want to leave unfinished business, especially when it comes to our breast health.

Fast forward to the greener forest. I am chairing that awesome event again this year, working in the real estate industry and loving it, and feeling stronger and more positive than ever. My oldest graduated from Notre Dame Prep and is headed off to college next week. And my younger one started there as a freshman today. Survival brings you opportunity for reflection and appreciation of what is important. It makes you realize you are lucky to be here, and gives you confidence to close one chapter and open another.

This really felt good. I have never written all of this down, and maybe someone will read it and be inspired. My website, www.sallycashman.com, has a survival story page tab with a link to the 3-Day. You are welcome to pay me a visit, and I would be happy to chat with you if you or someone you know is facing this process. Thanks for the opportunity to share my story. Survival is a beautiful thing.

Thursday, July 30, 2009

Mothering My Mother: Fighting Cancer
with Love, Laughs and Chemo

by Alyssa Dinowitz

When life is really trying to teach you a lesson about gratitude and strength, it gives you the opportunity to take care of someone other than yourself. Some of us—parents with small children, for example—do it daily and routinely on auto-pilot. But how do we parent when our parent needs care? There are no manuals called What to Expect When You're Not Expecting ... This to Happen to Your Mom!, or ADHD: A Dad, His Denial.

My mom, Marriann, has been living with breast cancer with extreme bravery for more than 12 years. Like millions of others, she was drafted an unwilling soldier into a war she didn't choose to fight. The most recent (and hopefully last) recurrence requires her to take oral chemotherapy. Little did we know how it would kick my sweet 4-foot-11-inch, 95 pound, fiery Italian mama's butt.

My mom is intelligent and beautiful, and her motto is, "Leave everything better than you found it." She believes everything deserves a celebration. When I was child she painted a dime-sized red heart on my cheek every Valentine's day, which I wore proudly as if it were Marilyn Monroe's famous beauty mark. On St. Patrick's Day, my sandwich, much to my surprise in the school lunchroom, was either dyed bright green or cut into the shape of a shamrock.

Joy is part of the routine. As a grandmother of 13, referred to as "Granny Spice," she is our favorite Spice Girl. She even refers to her visible tumors in her best "Fergalicious" voice as, "my lumps, my lumps, my lovely lady lumps." I joke that she is just wearing her pearls on the inside.

Most of her "hot spots" decreased in size or disappeared completely during her last round of chemo, which ended in November. Now, five months later, they've returned. Her doctor says her uptake levels are low. Translation: persistent, but not aggressive. If my family had a coat of arms, I would hang a banner with pride; "The Gofonias: Persistent, Not Aggressive!" It would be embroidered on gorgeous satin and adorned with a lion, dragon or some fabulous mythical creature.

The new chemo is Chemo with a capital 'C'—Chemo on steroids! "Chemosabe" is her new nickname. The interesting thing about this chemo is that the patient is usually sickest during his or her week off. This week is her week off. Lucky for me that I get to be the mama!

Our week began with a visit to the oncologist because she was weak. Three hours and two liters of IV fluids later, she had a tiny bit of pep in her step. She had never been "sick" from treatment in 12 years. I joked with her that since she never had morning sickness with any of her five pregnancies, now was her time.

We met a new crowd of life-lovers in the Chemo Lounge including "Elvis," an adorable 80-year-old man from Atlanta with an accent as sweet as a Georgia peach. He had blue suede shoes on, so I nick-named him Elvis and he loved it. He had a smile on his face the entire time. He bragged how these were the best years of his life and how blessed he felt—lung cancer or not. We met others with colon, breast and brain cancer, men and women, young and old. They all spoke of God's presence in their life and their faith in Him. They also spoke about choosing life by choosing chemo.

I sat there everyday and mentally thanked each and every one of them from the bottom of my heart. These wounded soldiers with their scars and bald heads are the most inspiring and positive people I've ever met. The funny thing is, they do not complain! They are always "fine." Filled with utter shame, I think "If I don't have my latte before nine, I'm whining." Gratitude is their attitude—they just want to live. Before we leave, I imagine them all wrapped in a blanket of the most beautiful, soft and healing angel wings. "Heal them, heal them," I repeat in my mind, begging for them to receive some kind of relief.

Next phase of the day is getting Mom home and into bed. When I fold her tiny load of laundry she says, "I can do it, I'm fine." If I bring her soup, water, Gatorade, anything, she refuses it. "Take another sip of water," I plead. "I'm fine," she says.

I resign and get in bed with her and turn on "What Not to Wear." I finally get a little soup and Jell-O down her and then it's a waiting game ... Cramps? Vomit? Diarrhea? I decide to massage her as she moans in discomfort from the intense stomach cramps. My hands make my way down her tiny back, fingers maneuvering around the shrinking tumors along her shoulder blades. I mentally tell them, "Now you listen to me, Cancer—I know you like living here. I did it for nine months myself; it's a great place to grow. But you've got to go. Your lease is up and some new healthy cells are moving in. Oh, and by the way, don't let the door hit you on the way out!"

She finally sleeps. I continue to rub her beautiful new hair. It's white, soft and curly like a new spring lamb. My Dad loves it and is always rubbing her head as if it were Aladdin's lamp.

Four more days of this go by and the symptoms are only getting slightly better. At times she is stubborn and difficult. Taking deep breaths, I inhale and exhale, cultivating patience. She was a nurse back in the day, so of course she thinks she knows better than I. As humans, we tend to struggle when we can't control a situation. As women, we always want to fix things. Illness forces us to let go and learn that sometimes things really are out of our hands. We get angry, bargain, question. My mother always says, "Don't ask 'Why me? Why not me?'" She's right again; mothers usually are.

The way I see it, life throws curve balls at everyone. Yes, this is hard for us, but doesn't everybody struggle with something? What is life if we are not forced to grow through painful events? Blessings are what they are. My family has never been closer, more tender, or connected. We are stronger—yes, we are tired—but I thank God for the chance to grow as an adult and, in this case, take the best care of my deserving, selfless and sweet mom.


Alyssa Dinowitz is the founder and owner of Chewylou Designs, an Ariz. based clothing line. Many of the styles in the Chewylou Designs collection are inspired by her mother's ongoing battle with breast cancer. She is also a registered yoga teacher and founder of Athletes Yoga, LLC, a company specializing in injury prevention and rehabilitation for professional athletes. Both of Dinowitz' companies actively support non-profit charitable organizations including Susan G. Komen for the Cure.