Category Archives: chemotherapy
It’s hard to believe that it’s been five years since one phone call changed my life in such a profound way. It was 9:30 on Thursday night, August 2, 2007 when I got the call. The tiny lump that had been removed 3 days earlier was breast cancer.
Five years later, I look back on that moment. I had no idea what the next day or the next year would bring. I just knew I had a fight in front of me, and I was going to do whatever it took to win. Exactly nine months later, the crazy whirlwind of regular trips to the hospital and the Rose Cancer Center was behind me. I was done with five surgeries and six chemo treatments. My hair started growing back and life returned to normal. But life was different. My outlook was brighter. I’d emerged triumphantly from cancer but I knew there were far too many women who didn’t. My focus shifted from my own fight to theirs. I decided I had to continue to fight on their behalf—to honor their memories. I had to continue to fight so that no other woman had to experience the pain and suffering of saying goodbye to their families. Our fight is far from over.
I don’t ever regret my experience with cancer. It’s a rotten disease—the surgeries were painful, the treatments were tiring. At times, I had to let go of my primary role as a mother because I just wanted to sleep. Losing that sense of control was hard, but it taught me so much. It shaped me as a person, as a mother, as a managing partner at my agency, as a cancer fundraiser, as a mentor to newly diagnosed women. It changed the way I view life, the way I view my family, the way I manage my team and my priorities. It made me realize that there is nothing more important than smiling, laughing and having fun. It made me realize the value of making other people smile, of making other people happy, of lending a helping hand. Yes, I’m different than I was five years ago. My experience with breast cancer shaped me into the person I am today, and I wouldn’t change it for anything.
It’s been a long interesting week, and I finally have a moment to share. After my diagnosis, I was connected to an acquaintance that had just finished her journey. She became a mentor of sorts—supplying me with cute hats, sending thoughtful cards and calling or emailing to check in on me. She was honest and inspirational all at the same time. We’ve kept in touch over the past two years—because breast cancer and the BRCA gene that we both share create somewhat of an unbreakable bond.
Just days before the Breast Cancer 3-Day, I learned her cancer had spread. The words our mutual friend shared with me twisted my heart, took my breath away and made me feel like I had the biggest kick in the stomach. Two days later, I walked and prayed and kept her in my continuous thoughts. The walk this year had a whole new meaning for me personally. I guess before this news, I lived in my blissful and optimistic world of thinking that those of us diagnosed with early stage breast cancer these days simply needed to do our time, have our surgeries, chemo, etc. and go on to live long healthy lives. While this news shattered that for me, I also felt incredible sadness for her and her family. I know her journey will be a tough one—I also know her incredible strength. On Monday Night, I got an email from her. She was back in the chemo chair as part of a PARP Inhibitor clinical trial. More hopefulness as these are the drugs that are showing the most promising results. She remains part of my daily thoughts and prayers.
About a year ago, I found a blog through my friend Pam. The blog was written by a young woman in Minneapolis raising three young children and battling late stage breast cancer 1 year after her early stage breast cancer diagnosis. I read her blog for several months following her journey. Just minutes after I read my friend’s email on Monday Night, I ventured over to Pam’s blog to learn that Cari had lost her fight. More heartache, sadness and the reality of this dreadful disease came crashing through me.
At the same time, breast cancer awareness month is kicking into high gear. I know there are many questions and potentially even criticisms about the amount of effort and money put into this disease. But we can’t stop. Not even for a minute. Not when stories like this continue every day. Breast Cancer is real and it’s cruel and we have to find a way to stop it in its tracks. It can’t continue to rob children of their mothers, to steal wives from their husbands, to make parents feel the pain from the loss of a far too young daughter. It must go away and until it does, I’ll keep fighting and I hope you’ll keep joining me.
In honor of my 100th blog post, I’ve started a list of 100 things to share about cancer. I actually thought a lot about this list. I didn’t want to bore with you with lots of useless facts. Haven’t found 100 organizations that I love and while I’ve met lots of cool people through my journey, I can’t think of 100 to highlight. This is a combination list and includes really cool organization, some interesting facts and statistics, great doctors, some cool people I’ve met along the way and anything else random I can share with you. I hope you find some of the links and facts within this post helpful. Please note: I am not a doctor–just a survivor involved in the breast cancer world.
I’ll start with really cool organizations. Some I know pretty intimately and some I just know on the surface. Regardless, they are all worth checking out and have some pretty great people involved.
- FORCE – this organization is near and dear to my heart
- Susan G. Komen – I’m guessing most people are pretty familiar with this organization
- The Pink Fund – helps women going through breast cancer with some great financial assistance
- Be Bright Pink – worth looking at this wonderful organization that helps young women with hereditary cancer issues
- Imerman Angels – one of my first connections when I started my journey
- Sky Foundation – nothing to do with breast cancer but started by a really neat woman looking to make a difference
- Ovarian Cancer National Alliance
- Cancer Schmancer – lots of great advocacy from this organization
- American Cancer Society
BRCA and other hereditary cancer facts
- About 10-15% of cancers are hereditary.
- A BRCA mutation can give you up to an 87% lifetime risk of breast cancer.
- Ashkenazi Jews have a 1 in 40 chance of having a BRCA mutation.
- The general population has a 1 in 400 chance of having a BRCA mutation.
- Family history on your father’s side is equally as important as family history on your mother’s side.
- If you have a family history of breast or ovarian cancer, you should talk with a genetic counselor to assess your risk.
- Triple negative breast cancer is common among women with a BRCA 1 mutation.
- Estrogen positive breast cancer is common among women with a BRCA 2 mutation.
- Men with a BRCA 1 mutation have roughly a 6% lifetime risk of breast cancer.
- Men with a BRCA 2 mutation have roughly a 7% lifetime risk of breast cancer.
- Bilateral mastectomy is the best way to avoid breast cancer in women with a BRCA mutation.
Random Breast Cancer facts and tidbits
- Each year 10,000 women under age 40 are diagnosed with breast cancer.
- As of 2008, there are 2.5 million women in the US who have survived breast cancer.
- There will be an estimated 192,000 cases of breast cancer in the United States this year.
- Inflammatory Breast Cancer is very frequently misdiagnosed. See other less common breast cancer symptoms below.
- If you feel a lump, it’s best to have it removed or biopsied rather than waiting and seeing.
- Women under 40 have very dense breasts.
- Abnormalities in breast tissue are difficult to detect through mammograms when women have dense breasts.
- Monthly self breast exams are very important.
- There are many types of breast cancers.
- Breast cancers in women under 40 tend to be more aggressive and have a worse prognosis.
- There are other ways to cut your risks of breast cancer if you are at high risk — like the drug Tamoxifen.
- Susan G. Komen spent 100 million dollars on breast cancer research in 2008.
- Every major advancement in breast cancer research has been touched by a Susan G. Komen grant.
- Women can get breast cancer in their 20s and often these cancers go undiagnosed.
- Doctors can test lymph nodes for cancer by first doing a sentinal node biopsy.
There are lots of other breast cancer symptoms other than a lump
- Swelling of all or part of your breast
- Skin irritation or dimpling
- Breast pain
- Nipple pain or nipple turning inward
- Redness, scaliness or thickening of your nipple or breast skin
- Nipple discharge
- Lump in your underarm
- Immediate reconstruction with tissue expanders
- DIEP Flap
- One Step
- Nipple Sparing
- Lat Flap
Really cool people I’ve met through my breast cancer experience
- Lori Buckfire – check out a hilarious blog from a very inspiring person
- Pam Lucken – a survivor I met after she was diagnosed, now a good friend
- Patti Nemer – knows everyone in the Michigan Breast Cancer community
- Valerie Fraser – Inflammatory Breast Cancer Survivor and big advocate in the breast cancer community
- Jonny Imerman – testicular cancer survivor and founder of Imerman’s Angels
- Missy Mazorati-Bergman – another wonderful breast cancer survivor who walked around with the boldest bald head ever for 6 months
- Laurie Alpers – survivor friend who got very involved with FORCE early on and now walks with me on Ta Ta Breast Cancer
- Whitney Ducaine – my genetics counselor who helped me start the first Southeast Michigan outreach group for FORCE
- Lindsay Avner – founder of Be Bright Pink
- Sue Friedman – Executive Director and Founder of FORCE
- Joanna Rudnick – Producer of documentary In the Family
- The women of Ta Ta Breast Cancer — both my new friends and old friends
- The walkers, crew and staff of the Breast Cancer 3-Day who devote so much to finding a cure for this disease
- My new FORCE family including all the wonderful genetics counselors in Southeast Michigan
- The women and men I met at the FORCE conference in Orlando
- Lots of really inspiring advocates I met at the Susan G. Komen Advocate Training
- The women battling cancer everyday and reminding me why I need to keep fighting
Fun websites to buy cancer gear
- Dr. Alvin Schoenberger – greatest OBGYN ever who was very aggressive in making sure we took action with my lump
- Dr. Jeffrey Margolis – brilliant Oncologist who treated me
- Dr. Daniel Sherbert – super nice and extremely talented Plastic Surgeon
- Dr. William Kestenberg – performed my biopsy, results on Thursday night, scheduled all my tests throughout the weekend so I didn’t have to wait the weekend to learn that the cancer had not spread
- Dr. Scott Schell – my breast surgeon
- Dr. Ruth Lerman – follows me for yearly breast exams, also a breast cancer survivor
- Dr. Dana Zakalik – Oncologist very involved in cancer genetics and helped start our local FORCE group
- Dr. Laura Freedman – Radiation Oncologist and personal friend who was always willing to talk to me
- Dr. Melissa Davidson – my trusted sister-in-law also a physician who reviewed my pathology report and all my test results and spent lots of time helping me navigate
- Dr. Scott Davidson – my brother-in-law who spent lots of time on the phone with me following my diagnosis and during my treatment
Easy ways to raise money
- No need to plan an elaborate black tie dinner, a backyard party with all the food donated and an auction can generate lots of good income without requiring a big donation.
- Promote your favorite places and ask them to make a donation in return. TD nails has donated several hundred dollars to the Breast Cancer 3-Day just by having people mention Ta Ta Breast Cancer.
- Have a bar night — we promoted our 24 Seconds fundraiser via Facebook and a small amount of email and raised over $1,000 without any out of pocket cost
- Theater nights — we promote and buy as many tickets as we need — raised over $3,000 for Annie
Some Great Books
- Why I wore lipstick to My Mastectomy
- In the Family
As I was developing this list, I realized that I have a ton of great people reading my blog who could provide some additional input into my list of 100 so I’ve left room in the list–I have about 10 left. Any organizations you love, doctors you trust, must-read books, new things you’ve learned, tidbits that we can all share. The more we can help eachother out, the better we can fight. So go ahead and post a comment, help me complete my list of 100.
Additions to the list
Thanks Molly, Patty, Kim, Laurie and Alyssa for adding some great sites and tips to check out by posting a comment. Keep em coming….
- Sister’s Hope – Recommended by the Pink Fund
- eraceibc.com – A site devoted to Inflammatory Breast Cancer
- Unbeatable – a musical about breast cancer. I need to know when they are coming to Detroit. Looks pretty darn funny. Check out the description I pulled from their website and the very cute image.
UNBEATABLE! juxtaposes the gravity of a cancer diagnosis with optimism, hopefulness and a keen sense of humor. The message of UNBEATABLE! is universal and applies to anyone who goes through life at full speed, without realizing that in the end, it is the people we love in our lives, not the “to do” lists, that deserve our time and attention.
- Dr. Julio Sosa – Plastic Surgeon
- Shades of Pink Foundation – non-profit to help women with financial issues after a breast cancer diagnosis
- Dr. Pamela Benitiz – Breast Surgeon
Another suggestion from a trusted source…
Dr. Gail Parker – therapist in Southeast Michigan available to provide support to people with BRCA Mutations
I’ve said before and I’ll say it again. I’m a lucky survivor. I caught my cancer early, I got my treatment and I feel great today. I did everything I could do to fight cancer—double mastectomy, lymph nodes removed, chemotherapy, oophorectomy combined with a full hysterectomy. My oncologist told me that even the most conservative radiation oncologist would not suggest radiation. I count my blessings everyday and continue to fight for my friends, Cousin, Mother, Grandmother, Aunt, Sisters-in-Law, Daughter and all the other women and girls out there. Until there is a cure, we must be absolutely vigilant about our health. In the world of breast cancer, there are many things we can do. We can know our genetic status, we can go for yearly mammograms (or more frequently, if necessary), and we can do monthly self-breast exams. We can catch this disease early.
Unfortunately, we are not so lucky with other cancers—specifically ovarian cancer. But there is something that everyone can do right now—today–to help in this fight. We can ask our Senators to support two very important ovarian cancer programs. One is dedicated to research and one is dedicated to raising awareness so we can catch this disease earlier. This will take no time but it will help save lives. Please do your part for all the women in our lives. Together we can continue to make a difference.
I’m anxious to hop on my treadmill for a quick walk—back in training mode. But I’m even more anxious to share my excitement at the latest news coming out of Washington. Representative Debbie Wasserman Schultz along with Senator Amy Klobuchar announced legislation they will introduce to educate young women (women under 40) about their risks of breast cancer. In a TV interview, Debbie Wasserman Schultz talks about her own successful battle with breast cancer that included 7 surgeries over the course of the year.
Ironically, she just told her children Saturday Night which made me chuckle a bit since there wasn’t anything my kids didn’t know. I’m guessing if I was a Politician I might have kept my discussion about my new nipples to myself instead of posting on my Facebook status and blogging about them. But I’m not and I did. And now I’m digressing a bit.
Representative Wasserman Schultz sums it up so well when she says that people don’t necessarily think about breast cancer under 40 (unless you have a family history and actually know you have one—unlike me). Even Physicians don’t always look at breast cancer as a serious risk for women under 40 and often insurance companies don’t want to pay for diagnostic testing for women under 40. So the plan for this bill is to change all of that with The Education and Awareness Requires Learning Young Act (EARLY Act) which would direct the CDC to implement a national education campaign directed at women under 40 and Physicians.
This bill will truly save lives by making sure women understand their risks before they turn 40. Right now there are over 250,000 women under the age of 40 living with a breast cancer diagnosis. Each year over 10,000 young women are diagnosed and 1,000 of them die. It’s time to make sure everyone knows they are at risk for breast cancer regardless of their age. Thank you my fellow survivor for helping us all through this battle.
On Wednesday, we had another great FORCE “Positively Empowered” meeting. The weather was terrible, the roads were terrible and the turnout wasn’t great but those of us that were there had a really nice time. We could have stayed for hours. In fact when the meeting was over, we reconvened in the bathroom for a show and tell and ended up chatting an additional 20 minutes. I’m happy to show off my new perky breasts to anyone considering a mastectomy. I was never one to go to support group meetings but these are so much fun and I’ve met so many super women.
I’m so thankful for Whitney Ducaine at Beaumont for working so hard on these meetings. She gave a really great overview on the new diagnostic test for Ovarian Cancer—OvaSure. While some researchers felt this was the best invention since sliced bread, there is lots more work to be done. Whitney agrees completely and feels this is not yet a recommended diagnostic test. In the one study that was done, they did not look at any BRCA women which would have been a critical component in determining the effectiveness of the test. Whitney did a great job of showing us the limitations at this point.
From a patient’s point of view, it’s always hard to know who to trust, who to listen to and what studies to read. It’s especially difficult when well-respected research centers put out information that is highly contested. And the more questions you ask, the more confusing it can get. Luckily, research plunges forward and the more studies we have, the more we will know.
Last week, I finished my 2008 photo album on Shutterfly. I have to say that site makes it super easy to make a really great holiday gift. I loved putting the album together and reflecting on the year. At the end of 2008, I couldn’t wait for 2009 to begin. It meant the last chemo treatment, finishing surgeries and new hair growth. My hair is crazy thick right now just as it always was. I’m still growing it but trying to figure out which length I like the best. The one positive side effect of losing all your hair is being able to try new hairstyles. And the album will be a great reminder of the many hairstyles of 2008.
It’s hard to believe this year is coming to an end. My kids have grown, I’ve grown and we’ve all grown as a family. They watched my hair grow, watched me recover from surgeries, watched me walk into closing ceremonies at the 3-day. I watched all of them start a new school year, my youngest learn to ski and my oldest get braces. This year brought a new level of normalcy and lots of happiness. Here’s wishing all my friends and family a very happy 2009!
During my cancer treatment, my kids helped to keep me happy and focused on feeling good. They also said so many cute things that made me smile. It’s fun for me to look back at my caringbridge site and remember some of the cutest comments and moments. For those of you that read my caringbridge site, these stories won’t be new for you.
My hair started falling out right before Halloween so I had the remaining hair shaved. For those of you that haven’t experienced hair loss from chemo, it’s pretty uncomfortable when it’s coming out so I was very happy once it was completely gone. I wasn’t sure how the kids would feel about the bald head but I found out quickly when I heard from another parent that my Kindergartener told her that his mom shaved her head and she looked beautiful. That thought continued to echo in my head the entire time I was completely bald. His sweet little friend couldn’t stop telling me how beautiful I looked and even said to his mom “Ellyn had earrings on and everything.” Love those little boys.
Throughout my bald days, we had many playdates that ended with a couple of kids using my bald head as an art canvas. I grabbed the washable markers, sat on a chair or the floor and let them decorate my head. The kids had fun, and it made my bald head a lot less scary.
Although the little guy was still pretty young, he loved my hats and bandanas. In the beginning he tried to see if his hair would come on and off too.
Little guy sporting my pink bandana. I know he looks like a girl–this was before his first haircut.
My daughter didn’t really care too much either way about my bald head. But she had her own funny moments. Early on, she named my port “lumpy” She made sure to hug me on the others side of my body to avoid an encounter with Lumpy. One day after a chemo treatment, I apologize for being a little tired and a little cranky. And her reply was pretty funny. “I know Lumpy got medicine today” and she looked up in my eyes and asked “Was Lumpy scared?”
And one of my favorite stories was from the day before my last treatment. I pulled this one right from my caringbridge site.
“On Tuesday, Michelle convened my 7 year old and three of her friends to help make the brownie cake and cards. At the same time, my 5 year old and Michelle’s 5 year old were busy shopping with Michelle’s mom for an end of chemo gift. I got the cutest, sweetest cards from the 4 girls all decorated beautifully with “No More Medicine” displayed on the cards. One wished me a happy life and said she hoped I never had to do this again. As the girls were sitting around making the cake, they had an interesting discussion. One said, “I know we are doing this because Ellyn has cancer”, to which another responded with eyes wide, “Ellyn has cancer??” That’s when my daughter piped in, “Not cancer, BREAST cancer.” “Ohhhhhh” they all responded.”
Posting my blogs on Trusera.com has given me an opportunity to think back on some of my experiences last year and they weren’t all negative. Yes, I’m glad they are in the past but I continued to live my life throughout the year enjoying many days and laughing with my kids whenever I could.