Whether it’s heartfelt anecdotes or inspiring triumphs, the Scarves Dot Net gals love to share stories — especially when they’re incredibly touching. That’s why we’re starting a new series called SDN Spotlight. From influential bloggers to community leaders, we’ve scoured the blogosphere for the most inspiring men and women.
To kick off our series, we’ve invited bloggers to speak about their experiences with breast cancer. While October is Breast Cancer Awareness Month, we believe breast cancer support and fundraising for research should happen year-round. That’s why we’re creating a special resource compiling interviews, information, and more. It’s in the works and set to launch in 2013. So enjoy the stories, feel free to share your own, and keep your eyes peeled for more!
Our first featured blogger is Ann Silberman from Breast Cancer? But Doctor…I hate pink! Ann is just the most wonderful, strong woman — we love her zest for life and ability to find humor in the toughest of situations. We were given the lovely opportunity to ask Ann a few questions, and as she says on her Facebook page, she’s certainly “a breast cancer ass-kicker” if we ever knew one. ;)
SDN: Could you give a brief introduction for our readers about you, your family, and your interests and hobbies?
Ann: I’m a wife to a wonderful man, a mother to two boys, and step-mother to two girls. My sons are 25 and 15, so they are not close in age, but they are close in relationship. My stepdaughters are in their early 30s. I am now 54, and no longer worried about aging!
I have had a lot of jobs over the years, ranging from bartender to cruise ship worker to IT specialist, but my favorite one was high school secretary. I loved working with the kids and the teachers. It was just the greatest job, and the people who work in schools are the most supportive and fun. I had to give that up in July, but I really miss it.
My interests are quiet ones. I like to read. I say I like to scrapbook, but I’ve never finished one, so maybe I don’t like it as much as I thought! I enjoy writing for my blog. I used to enjoy cooking but cancer has made that one more difficult. I like silly TV and shows like Survivor. Just simple things, really.
SDN: When and how was your breast cancer discovered, and how you did you and your family deal with the news?
Ann: I was diagnosed in 2009 with Stage II cancer. I found a dimple in my breast. At first, I thought the dimpling was just a mark my bra was leaving, but as it became a lump — which happened pretty quickly — I realized I had better get to the doctor. Still, I thought it was probably a cyst (I’m not prone to thinking the worst). I think it was about 2 months between the time I first noticed it and the time I went to the doctor.
When the doctor told me it was cancer, it was shocking, of course; there was no history of breast cancer in my family and I was not expecting it. But, I adjust to things quickly, so once the immediate shock was over, I went on to the business of treating it. And, in a way, it is a business. It takes up so much time, you would not believe! To date, I’ve had more than 150 doctors appointments and dozens of tests and surgeries. I think everybody is surprised how much you have to do — sometimes, you have four doctors appointments a week.
My family took the news well, too, but I think they tend to take your lead. I’m not the hysterical or crying type. For me, I wanted to learn as much as I could about it. You are not in control when you receive a cancer diagnosis, so you find little ways of making yourself feel in control. Knowledge was my way.
I also started my blog as soon as I was diagnosed. I wanted to have a way to get information out to all my friends and family who would want to know what was going on, but I didn’t want to have to repeat information over and over. A blog seemed like the perfect way. I started writing it with humor to keep people interested (and to stop phone calls) and basically, it just took off.
SDN: Can you describe your journey with breast cancer?
Ann: People keep talking about this mythical journey with breast cancer, but so far, I’ve stayed right here in California! :) My treatment has been long and arduous. Initially, I had a mastectomy and then did six rounds of chemotherapy (taxotere and carboplatin). I had some problem with the taxotere and neuropathy, so I switched to taxol, and I did weekly herceptin for a full year. Once the year was up, I felt very free — I was done. I was a Survivor. I had already decided that I was not going to worry about cancer returning. I was going to believe that I got my life back and live in that way.
Unfortunately, only a few months later in May of 2011, a scan showed a spot in my liver and a biopsy confirmed that it was metastatic cancer. It was found relatively quickly. I’d been having some back pain, and my doctor did a bone scan — which found nothing. The next time I saw him, he asked me about the pain, and I said it was still there. I figured by then it was my bed or my chair at work, but he took it seriously. He did an abdominal CT which found the spots in the liver. Oddly enough, it had nothing to do with the back pain, which I still have. Since I no longer work, it must be the bed! I was Stage IV and the cancer was terminal. My oncologist is very forward-thinking, and because it was only in my liver, he referred me to UCSF, where I was given a liver resection. They took all of the left lobe of the liver out and ablated a spot of cancer in the right lobe.
I dealt with this diagnosis the same as I did the first; I tried to get a handle on it with knowledge. I know better than to just Google it, because you just find horrible things, so I read Medline and other sites for information. I was very excited to be given the option for the liver resection — it is rarely done on breast cancer patients. I wish I could say I was cancer-free after that, but cancer seems to have come back in that ablated area, so in two weeks, I will be going to UCSF to see if they can re-do that spot. I am sorry it has come back in the ablated area, but am hopeful that we can do it again.
Still, there is good news – it remains in the liver and has not traveled to the brain or lungs or anywhere else. If we can kill it with ablation again, I still have a shot at a few years. In the meantime, I have continued on different chemotherapies, so after the original ones, I have been on Navelbine, Abraxane, and will start my sixth chemo called Halaven next week. Chemo makes you pretty tired, but it’s not like the movies. You keep your hair on some of them, and I’ve never vomited one time. Last November, I also acquired a terrible disease called c-diff, which made me septic and nearly killed me. It took a while to recover from that, but here I am.
SDN: Who has been your biggest support through all of this?
Ann: Obviously, my husband and children have been the greatest support. My husband has had to take on the day-to-day things that I’m just too tired to do, like cleaning and taking my son to competitions. My sister was supportive when I had surgery — she came from Southern California to see me in the hospital, watched my younger son, and cleaned the house (which needed it!). My oldest and dearest friend just came to redecorate my bedroom, since I spend a lot of time in there! She has carpentry and construction skills, and gave me this fabulous retreat — it’s really amazing. I had to give up my job in July, but the people I worked with are still supporting me, with thoughts, poetry, and gifts. This week, somebody gave me a lovely blown glass candle-holder and a teacher-friend brought me a meal It’s just amazing how supportive people can be at a time like this.
SDN: We admire the statement you made on your blog recently: “Finding a cure is the answer. Finding out why it spreads is the answer. Research is the answer — not awareness.” Could you talk a little more about this?
Ann: Yes, working in schools the way I have, I know that even children know about breast cancer. I didn’t only work in high schools; I started in elementary school. Everybody knows about breast cancer and the need for checks. It is now ingrained in our culture. 40 years ago, maybe breast cancer was something you hid or were embarrassed about, but not these days. So, awareness has been reached, and yet so much money — billions of dollars — are still being spent on this concept of “awareness,” which is now meaningless.
The fact is, catching breast cancer early doesn’t always save lives. Only 6% of metastatic women were diagnosed as Stage IV, the terminal stage, from the beginning. The rest of us were diagnosed in early stage. Many of us, myself included, never had cancer cells in our lymph nodes or any vascular invasion — and yet, it still spread. So, money needs to go to research to figure out why breast cancer travels, what turns cancer cells on, what causes them to be out of control, and how to stop them. Finding it early is just not enough — I found mine early. If those billions of dollars were spent on research — actually for a cure — then I think we would be much farther ahead.
There are charities that are working to get promising treatments to patients; Stand Up 2 Cancer is one such charity. I would urge every woman reading this to pay attention to where your dollar is going. Don’t buy pink, or anything that is for “awareness.” This whole pink ribbon thing is a marketing ploy, and companies are using our disease to make a buck. Sales go up in October, but deaths never go down. If you are moved to give to a breast cancer charity, find one that involves itself in pure research. Alternatively, find one that does direct patient support . There are charities that give women trips and time with their children in a neutral locale, for example, and some that give them an all expenses paid fishing trip.
SDN: Are there any other assumptions or misconceptions about breast cancer that you would like to shed some light on?
Ann: The myth that early detection leads to a cure is a big one. By now, I know hundreds of woman with late stage cancer. Nearly all of them were diagnosed early stage, and their cancer came back. That is not to say a woman shouldn’t get her mammogram or ignore her health, but there is an assumption in the Pink World that if you catch it early, you’ll be okay. And, sadly, that is not the case. Something like 25% of early stage women end up like me, with metastatic disease. I’ve heard too many times, “Nobody dies of breast cancer anymore,” and that is because of the Pink Culture and emphasis on Survivorship. Women like me, the ones who are going to die of cancer — we are the ugly side of the pink ribbon. You never see us or hear our stories because we are the failures. You can’t market products if the end result is death, so Komen and everybody just pushes us away.
And then, I think that you might be surprised to know I have metastatic cancer if you met me. I might be standing in line at the grocery store, and I am dying of a disease, but you don’t know it. I have hair most of the time — I look relatively normal. My main issue is being tired. So, be nice to people, because you really don’t know what they are facing or living with.
SDN: You have been very transparent about your life on the blog. What are you hoping that others take away from it?
Ann: Well, I didn’t start it out to be an inspiration. I just wanted to be able to provide information to my family, so they didn’t wake me up when I was sleeping! I was transparent because I didn’t think anybody would be reading it. But, it caught on, and now I look at it differently.
I wanted to let women know that they could manage with breast cancer, it wasn’t as scary as they thought, and they would be okay. Heck, if I could do it, anybody could, and there is a lot of humorous things that happen when you are being treated for cancer, so I described them all. I wanted to capture them so a woman might remember, “Oh yeah, Ann said a PET is a penis machine,” and maybe giggle when she would have been scared. I was disappointed when mets were found, not for myself so much, but for all the women who were relying on my point of view to bolster their own treatment with cancer. I suddenly became every cancer patient’s worst nightmare, and I felt like I was betraying my readers.
But it is the reality of breast cancer, and now I want to let people know that even though one might have a terminal disease, there is a lot of good life left to be lived. It’s shorter, for sure. I have mourned the things I may never get — the grandchildren and the time with my husband, but nobody is promised those things anyway. Now I have to live each day as it comes, and it is a challenge sometimes, but I am managing. And there is a lot of beauty in doing that, in being able to appreciate each day and all it brings. I have promised to blog until I can’t anymore, to let people know how it goes in the end. We all die. Nobody wants to, nobody is ready. But, that is the cycle of life. I have my children, and they are good people, so really, I’ve accomplished everything I’ve wanted to.