I have this amazing friend named Michelle (she is the blonde on the right in the photo contained within this post – the brunette on the left is my friend Sherry). She is one of my heroes. She lives every day with Multiple sclerosis. She doesn’t whine about it, she just lives and is truly amazing and inspirational a woman. For those of you who read my breast cancer blog, I have written about Michelle before here and here. Michelle writes about her journey with MS on her blog ms social.
She told us recently that she was pregnant and all of her friends are so happy for her as she will be an amazing mom.
However, right now she is in Pennsylvania Hospital with severe preeclampsia. She is in-patient for the next several weeks.
She sent me a note that she gave me permission to share…
No, sky-diving I will never try. But I had wanted to ride in a hot-air balloon. And I did so the other day. (Click here for a little video of the take off).
My friends Teri and Barry DiLibero, who own this crazy cool experimental balloon shaped like an American flag called America One invited me for the special 9/11 ride. They had America One in the works being built one week after the attacks in 2001. They tour all over the US with this balloon.
This balloon was one of several which went up to honor first responders and commemorate the 9/11 terrorist attacks. I wrote about 9/11 a few years ago, and you can read about it HERE. Truthfully, 9/11 had significant meaning for me, not just because of what it was and all the people (including some I knew from college and days past working in NYC who perished) but because fate is a very strange mistress and in 1993 I was with a woman I worked with at the time on a trading desk in NYC named Deirdre, and we happened to exit the World Trade Center shopping concourse as the garage was blowing up. Yes, the first attack.
Feb. 26, 1993. was the date of the first terrorist attack on the World Trade Center in New York City. I worked in New York at that time at an office located downtown in the financial district.
Anyway, post-shopping we were back outside the Trade Center buildings, getting ready to cross the street, when suddenly the ground shook and moved. I remember that we were looking directly across the street at Century 21, a department store in Lower Manhattan.
Then something happened that rarely happens in New York: Everything went eerily still and quiet. We looked up at what we first thought were snowflakes beginning to float and fall from the sky. After all, it was February.
Then car alarms began to go off one by one like the cacophony of many distorted church bells. The snowflakes, we soon discovered, were in reality ashes. We had no idea what was going on, people started screaming, sound erupted once more, and we returned to our office at 44 Wall Street and found out what had happened.
So on 9/11, I knew what was going on once the news broke: they had come back. Now of course, this 9/11 there were attacks on US embassies in Cairo and Libya, and in Libya the ambassador was murdered and I think three aides. I am so incredibly tired of Middle East conflict. Let them have their holy war on another people.
Of course I had no idea about what was going on overseas as I went up in a hot air balloon.
It was so incredibly moving as we lifted off to see this green field in Chester County, PA dotted with the blue uniform shirts of the nearly 100 first responders from multiple local volunteer fire companies who decided to show up for these balloons – mind you that wasn’t really part of the initial thing, but when all these fire and rescue personnel heard about the balloons going up on 9/11, they showed up.
So in addition to the emotions of 9/11, I also had the emotions of being a breast cancer survivor floating high above the earth. As we glided, I could see for miles and miles. It was a very soft feeling, and oddly freeing to soar like a bird for a little while. It was very, very cool.
Maybe the balloon ride was my next zen moment post breast cancer, or maybe I just enjoyed it that much. I don’t know. What I do know, is I can cross it off my bucket list.
So I am still dealing with Tamoxifen and the hot flashes and lack of sleep, but some days are a lot better now. So I guess my body is adjusting. I have a mammogram again on Friday. I wonder when I will stop being anxious about those?
In the news, actress Kathy Bates told the world she is recovering from a double mastectomy after a breast cancer diagnosis. She had previously survived ovarian cancer.
As opposed to those celebrities/news talking heads like Giuliana Rancic and Andrea Mitchell, her style of letting everyone know was realistic, down to earth and had some very much appreciated by me slightly self-deprecating humor. She said (and I quote):
“I don’t miss my breasts as much as I miss Harry’s Law,” added the Emmy-nominated star of the TV legal series, which was cancelled earlier this
year.
She also did not pronounce herself “cured”, nor did she give the series of interviews on various shows doing the happy-perky-it’s-o.k. schtick.
Kathy Bates is a real woman, and handled the disclosure of her personal business beautifully. And with dignity. To her I say Brava for doing that and keeping it real. I chose to be positive and get through my breast cancer, but that being said the fake chirpiness from celebrity types over this is slightly nauseating.
I have a few hundred photos to sift through from my balloon ride, if you all would like, I will post a set link when I am through. Life marches on with my sweet man, I have a few more professional bylines under my belt for little pieces I have written, and I am in a cookbook being released in October by Epricurious.com.
So all in all, how crazy is it at the end of the day that in a sense, having breast cancer was a very positive life altering experience? Maybe my thought process is skewed, but I think becoming a survivor freed me in a way, so I could live a better, more fullfilling life. It also has made me more comfortable in general with who I am, and less apologetic.
Surviving is a really big deal. And I am continually proud of myself for facing the reality of my disease and living through to a better place.
Call me crazy, I think the balloon ride was as significant as it was symbolic. I think all breast cancer survivors should take one.
I will admit to still being up in the clouds after yesterday’s hot air balloon ride. It was such an amazing experience. As a breast cancer survivor, like many others, I have a bucket list. I had never been on a hot-air balloon, and while I would never sky-dive, this is something I wanted to do. So I can cross this off my list!!
I took hundreds of photos…including from the air….I am still sifting through most of them.
Yesterday however, more Americans died on 9/11. In fact, a total of four Americans died in Libya in an extremist attack. Ambassador Chris Stevens and three other embassy staffers were brutally gunned down by a rocket attack on the car…
And for what it is worth can we stop talking about Prince Harry of England’s ass? I am not anymore interested in seeing his ass than his granny’s and we all have one and know one or two so let’s just move on, shall we?
As I look around my living room, in my mind’s eye I still can see my old living room, albeit a little blurry now. As I continue to settle into this new life of mine, you have to observe (or at least I think you do) how your old life fades slowly into the background and becomes a series of memories.
Life is about evolution. Think about the stages of our lives from childhood to adulthood. Evolution is about adapting and changing too. Trying new things, setting new goals. Living dreams. In my case, add surviving breast cancer.
Into my new life have come my family and most of my friends. I have noticed some drop off because that happens when your life changes. For some, I am sort of out of sight out of mind and that is o.k. There are also people who have just dropped off and while most people are happy for me, it’s also life that maybe some aren’t so happy. That is not my responsibility, however. My life has changed, and I do have to think about me, what I want, and what being part of a family unit involves and means every day. Like it or not, that changes somewhat the day to day dynamic. To go from thinking about “me” to “we” is a way to sum it up. Or you could just call it growing up and doing lots of laundry:<}
Breast cancer forced me to look at a lot of things. It also made me face fears about myself. Like driving. Unless you are of my inner circle, you don’t know that I really did not like to drive. I still don’t love it, but I am doing more of it, and the fear is receding.
Breast cancer definitely forces you to look at all sorts of things. It makes you look at your dreams, even the ones that seem unattainable and Walter Mittyish. Surviving a bout of breast cancer made me want to transfer some of my dreams to a bucket list. To make some of them a reality, versus a wish list. Two of those things were my writing and photography.
The writing is happening. I am doing freelance for The Philadelphia Inquirer’s online presence Philly.com/neighbors main line and other publications like Main Line Parent Magazine. (My latest Philly.com byline can be found here.) I still jump up and down when I see my byline it makes me so happy. And people continue to respond positively to this blog and my chestercountyramblingsblog . But the writer not merely reader bylines in regional publications? Such an amazing feeling of accomplishment.
And also the photography is happening. I entered that I Love Classic Towns Photo Contest put on by the Delaware Valley Regional Planning Commission way back when, remember? Well tonight they announce the winners at a gallery opening at the Ambler Theatre in Ambler PA . So how cool is that to be part of a gallery opening? I am so excited! Follow the gallery show link here and look for a black and white photo called “Window Soldiers” . Another thing to check off the bucket list. (Today I also have an accidentally uncredited photo appearing in Main Line Today Magazine’s food blog The Main Course.)
In the breast cancer of it all, I still have heard nothing back yet about the BRCA test.
Anyway, that is all from the land of me. And mind you, without the love and support of my sweet man, my bucket list items might still be wishes versus reality. It is amazing what the right relationship does for your life, isn’t it?
Life is only a glass half empty if you allow it to be, right?
Sorry to use a pink metaphor, but think pretty in pink ladies!
We are not deformed, we are beautiful, we have survived. I feel VERY *strongly* about this.
Umm hello? I am a proud owner of 1 6/8 boobs. My left boob is less than perfect, but I am alive. We all have days where we are uncomfortable in clothes, but as far as deformity, do-not-go-there! It is what it is, and I would rather have less than perfect breasts than breast cancer!
Remember the beauty in survival.
Life is not a glass half empty proposition. And for the record, God never gives you more than you can handle.
And yes, you have to go to the dark place occasionally to come out the other side, that is only human.
But look at the big picture and celebrate the fact you can get up in the morning.
Simple gifts and the magic of ordinary days.
Capice?
And in other boobalicious news, there has been a shake up at Susan G. Komen. President Liz Thompson will leave Komen next month and founder Nancy Brinker will give up the CEO role. Board members Brenda Lauderback and Linda Law are also apparently leaving. Me thinks the fall out from the Planned Parenthood debacle was too much. Whatever. I do not support Komen. They are big pink plastic crap generating machine as far as I am concerned. I prefer smaller charities like Living Beyond Breast Cancer and BreastCancer.org
I not only met with Beth the program coordinator for the Cancer Risk Evaluation Program, I met with the doctor she works with and whom I think heads up a lot of these studies at Penn – Dr. Bernard Mason. Couldn’t remember his name until now. (Due to a Brunette moment). He told me that I have met enough of the criteria including cancers popping on both sides of my family in different generations and a paternal grandmother who had breast cancer to test me .
So they drew blood and it will be about 3 weeks unless my health insurance freaks out and takes forever like they did with the oncotyping. (Which they had better not do since I saw their criteria form.)
So now we wait. It will be whatever it will be, no point in worrying one way or the other. I am alive and kicking, so we’ll just see.
It was an interesting discussion. They are building a family tree of disease on me basically. I had to call my cousin Lauren to see what cancer it was they finally diagnosed her mom, my cousin Suzy with.
With Suzy apparently, as per Lauren, first they thought it was cervical. Then they thought it was ovarian or uterine. Apparently after they did a hysterectomy, it was primary peritoneal mesothelioma.
So I am confused. But I think mostly I am upset because I saw and I remember what cancer did to Suzy and I remember what it did to her kids having to watch her shrivel up while she fought like hell. And Suzy fought it.
I remember when I went to see her when she was on hospice. They had set up a hospital bed in the downstairs of her house in Quakertown. It was and still is surreal. It was fall, around Halloween. For some reason I remember my cousin Lauren was making meatballs in a crock pot that day. The weird things you remember, huh?
I almost went to complete pieces a little while ago because I just was Googling to find a 6ABC health check report Suzy was in and stumbled across a book I guess her second husband Tom had published. Called Cancer A Love Story. I would read it, but I can’t. Don’t know if that makes sense. When she was sick, so was my father. She died a year to the day after my father – the exact day a year later.
OVARIAN CANCER
04.12.06
If you’ve recently been treated for ovarian cancer, you may be able to help a local cancer center develop a test to find this deadly disease earlier, and more accurately. Fox Chase Cancer Center is studying proteomics, or protein patterns, in hopes of finding a biologic “fingerprint” for ovarian cancer. Right now, most ovarian tumors aren’t found till they are advanced, and may have spread to other parts of the body. And the only way to confirm it is with surgery, to remove the ovaries. But Dr. Mitchell Edenson says finding that “fingerprint” could change that.
Dr. Mitchell Edelson/Fox Chase Cancer Study: “If we can pick it up when it’s just limited, or limited to the pelvic area, we have a better chance of curing the cancer.”Dr. Edelson says one challenge is to make a test with no false positives.
Dr. Edelson: “We have to make sure that it trulis only in ovarian cancer, and cannot be explained in anything else.”Suzanne Gallen Lucas had no signs or symptoms before her cancer was picked up through some free-floating cells that appeared in her Pap test. She’s joined the study, which only requires giving a blood sample. Suzanne says it’s a small sacrifice for future generations.
Suzanne Gallen Lucas/Quakertown, Pennsylvania: “I have 3 daughters and a granddaughter. I’d like to be able to think that they’re gonna be spared.”For more information on the study, call 215-782-3672. http://www.fccc.edu
Ironically, her doctor mentioned there was the husband of one of the doctors who used to be one of my gynecologists – before she went into research.
Wow, what a trip down memory lane.
Here’s hoping I have absolutely nothing in the end to BRCA home about. If I do, we’ll deal with it. Just like we have dealt with everything else. But I think it is important for me to do this test and I am glad I did.
If I could just turn my head off after today it would be good.
Life is indeed ebb and flow. When you are diagnosed with breast cancer, you really go ebb and flow. After you are through it and into survivor category in a sense it is still ebb and flow because you are forever more give and take. Breast cancer takes away, yet in a weird way it gives you access to parts of yourself that can be very, very positive if you can look at life as not the glass half empty.
And face it, when you have life, that is a gift where the glass is definitely more than full.
I just received a call from my friend Sherry. This really amazing artist who does the most beautiful print work has breast cancer. Her name is Linda Dubin Garfield . Today’s art in the post is one of her prints. I believe it is one from her “Ebb and Flow” series.
Linda’s surgeon, according to her new breast cancer blog is the same surgeon I had, Dr. Dahlia Sataloff. Everyone who knows me knows how much I adore Dr. Sataloff. She is amazing, and it is nice to hear Linda is in good hands.
Linda is not a friend of mine, but I sooo feel for her as I read through her blog this afternoon. I totally get all that she is feeling. After all, I was her barely over a year ago.
Her blog is called toooldtodieyoungblog and her posts are wonderful. First of all they are wonderful because she is getting her feelings out in the open which I found very helpful. Honest human emotion and great humor when called for.
I am a sharer. I talk and I tell but since I got the bad news about the shadow I have not shared my concerns because I had hoped it would be nothing like 80% of the cases are. Go with the majority, I figured. This time I was in the minority. So I told a few people, then a few more, now I am sharing with a lot more….now when I have breast cancer, I want to be open and discuss it. It’s a disease, not a curse or something I am ashamed of. I am open to talking about it and getting rid of it asap!!
Amen to that! I had people who looked at me like I had two heads one green when I was telling them I had breast cancer. Oh yeah, I got the “what is wrong with her discussing that so openly?” ….behind my back (What? You still think I did not know? I didn’t care, but I did know.)
Good for you Linda! Talking helps. Being positive even when it is hard helps even more. She and I know a few people in common, and I also know someone we know in common who is a new survivor. This other woman probably doesn’t realize I know she is a new survivor, but the point is this thing called breast cancer is all around us. So we might as well talk about it, right? People that can’t handle the discussion don’t have to listen – it’s o.k. and understandable, even if it isn’t my perspective exactly, although I will freely admit there are some days I have a hard time hearing about others who get diagnosed. But that is just part of being human. Humans are complex.
In a post called Twilight Zone she remarks how she is learning not to go to appointments alone. This Linda should meet my friend Linda who did the Driving Miss Daisy List. Seriously, that is a debt of love I will never be able to repay. Without my posse I would not have come through so well.
Linda talks about waking up at o’dark early worrying. Wow I get that.
Linda, I admire your work as an artist and I admire your courage. One day at a time and speedy recovery!
Here it is the hottest day in recent memory, and I am flashing up a storm anyway today, so hot feels extra hot to me.
Yes, it is 100 degrees down from I don’t want to think about it, and it is dinner time. The phone rings.
BCPF 412-228-4509 is what the caller ID says when I answer.
As soon as I said “hello”, I knew what the call was: another bogus breast cancer charity call.
Janet calling me from a phone solicitor for Breast Cancer Prevention Fund. She was Polly Perky telling me how they were calling all Pennsylvania residents and they were helping women get mammograms and raise awareness. According to her, Pennsylvania had lost all their funding. Her caller ID showed a Pittsburgh area code. Only she was calling from Washington State. From a company I now know is owned by the same man who owns this bogus breast cancer charity!
James Paton, your troll called the wrong survivor.
I asked her how many cents on the dollar actually went to programs. She kept reading her script.
I made a crack about calls at dinner time, and she said that dinner time was at different times everywhere.
Really?
I asked her again how many cents on the dollar actually went to programs. And where they were located.
She said Washington State.
Then she said 10 to 12 cents. I asked if that is what the phone solicitors made or what the charity retained.
No answer.
“I’ll send you a pledge card” she says.
Then she got it. Me in all my Tamoxifen, hot flashing, survivor’s glory.
I told her how dare she call a survivor on a cold call for a bogus charity asking for money.
I told her to put me on the do not call list (this is the 4th or 5th time they have called incidentally.)
Now look what I found on KomoNews.com while I had this woman on the phone – it was like they were listening to my phone call, only this article is months old:
By Tracy VedderPublished: Nov 11, 2011 at 12:21 AM PDTLast Updated: Nov 11, 2011 at 12:41 AM PDT
EVERETT, Wash. — There’s no question that breast cancer touches millions. Thousands walk for a cure. An entire month is devoted to breast cancer awareness.
So when Legacy Telemarketing of Everett raises money for the Breast Cancer Prevention Fund, also of Everett, the plea for money inspires people to give.
Insiders with the telemarketer told the Problem Solvers they typically start off by asking for a donation of $180. They tell prospective donors that $180 would help two women, and that they believe the money is for just one thing: “for women to get mammograms.”
That plea touches people like Carl Hu, whose wife and sister both fought hard to survive the disease.
“That one-year period was definitely a very trying time,” he said, remembering their battles.
Well-aware of the value of mammograms, Hu was ready to donate until he took a closer look at the charity.
“What I found was just nothing short of shocking,” he said.
The Breast Cancer Prevention Fund, or the BCPF, was founded in 2004 by James Paton. And that same James Paton is also listed in records from the secretary of state’s office as the owner of Legacy Telemarketing.
“That sounded some huge alarm bells,” said Hu.
According to documents obtained by the Problem Solvers, Legacy and BCPF share the same post office box and the same storefront in Everett. And BCPF has been Legacy’s only nonprofit client since 2007. The relationship has made millions.
“It sounded like a huge conflict of interest when the president of the charity is employing his own telemarketing company,” said Hu.
Hu said the Legacy telemarketer was clear about where his donation would go: “During the phone call, they assured me all the money would go to pay for mammograms.”
That’s what two Legacy employees, one past and one current, confirm they were told to say. One woman, who asked to remain anonymous, told the Problem Solvers she was told to say “that we’re raising money so that uninsured women can receive mammograms.”
And April Calf-Robe, who no longer works for Legacy, said she was told to say “that we were raising money to help women in their area get mammograms.”
And BCPF has paid for mammograms. According to the charity’s IRS filings, since 2005, BCPF has paid out almost $3.5 million for mammograms for uninsured women. But over that same period, the charity, through Legacy telemarketing, raised nearly $17.5 million. After expenses, the charity has paid Legacy nearly $10.5 million. (See IRS filings: Part 1/Part 2) …At the only address for BCPF and Legacy Telemarketing, no one wanted to explain where that $10.5 million went. When the Problem Solvers asked for anyone who could answer questions about BCPF, the staff members said no one at the location could do so. And when we asked to speak to Jim Paton, manager Jeff Cunningham told KOMO News, “He doesn’t particularly work out of this office,” then asked us to leave.
Though Paton owns three businesses including Legacy, his only other address is a waterfront home on the south end of Lopez Island. He purchased the home for $1.5 million three years ago and continues to improve it. He is currently adding a large additional garage structure.
The Problem Solvers went to his island home and asked to speak with him. A woman there said Paton was in Everett. But we found the Legacy headquarters locked up, reporting telephone and computer problems. We found one of the cars registered to Paton parked out back, but no one would come to the door.
When we finally reached Paton by phone, he refused to disclose how much money he makes from Legacy, refused to sit down for an interview and continues to refuse to answer e-mailed questions sent to him at his request.
“Certainly it’s a conflict of interest,” said certified public account Ed Clark. The Problem Solvers asked the CPA firm of Clark, Raymond and Co. to review BCPF and Legacy’s documents. Comparing IRS and state filings, Clark, the firm’s owner, said it appears Paton is not being upfront and disclosing for donors and regulators how much money, if any, he’s making from Legacy.
“I think the Internal Revenue Service would be very interested in looking at this arrangement,” he said.
Legacy’s phone solicitor Perky Janet gave me a phone number 1-877-810-5921 “program services”.
If organization is legitimate why don’t they send their information to the BBB and let them give the organization a thorough review. The lady I talked to on the phone lied to me and said 90% went to women to get mammagrams. Shame on you for scamming your fellow women. Give to an organization where the donations will really help those in need.
I worked for Legacy Telemarketing and was one of those people calling people asking them if they could afford to donate $190 for 2 women to get mammorgrams. I read from a script that said ” It appears the women in your area have lost their local funding for mammograms. Breast Cancer Prevention FUnd provides these women with free mammograms. One mammogram cost $95 can you donate $190 to help 2 women get mammograms?”…I only lasted a few days doing this mind numbing kind of work but I am so glad i quit now that I heard that the BCPF is owned by the man who owns LEgacy Telemarketing…he was hiring us to get money FOR HIS profit. Only 3 million went to women and mammograms…he made $17 million…WHERE DID THE OTHER 14 MILLION DOLLARS GO MR. STAFFORD? He has a million dollar home on Lopez Island…what a horrible person to do this.
Moral of the story? The Breast Cancer Prevention Fund is just as bad, if not worse that The Breast Cancer Survivors Foundation. And just like the Breast Cancer Survivors Foundation, they have been outed by the media.
Screw them and the horse they rode in on. Hang up on them. Report them to your state’s Attorney General’s Office as they ALL have an office within their offices that deal with charities and non-profits.
By all means give to charity, but the legitimate ones don’t call you like this. Check your charities out. If the shoe doesn’t fit, again, it is o.k. to say “no”.
Dear readers and fellow survivors, you all know my bucket list life item post-breast cancer as far as my writing goes. I am cross-posting so you can see my first byline in The Philadelphia Inquirer. I feel like I won the lottery :<)
And of all the super coolness possible with this byline, it is also over on the main news stack under food. My byline right up near Craig LeBan. Who woulda’ thunk it? I love to write, and this is some amazing validation. And I am thrilled to be able to write about things I love!
I have this amazing friend named Michelle (she is the blonde on the right in the photo contained within this post – the brunette on the left is my friend Sherry). She is one of my heroes. She lives every day with Multiple sclerosis. She doesn’t whine about it, she just lives and is truly amazing and inspirational a woman. For those of you who read my breast cancer blog, I have written about Michelle before here and here. Michelle writes about her journey with MS on her blog ms social.
And for what it is worth can we stop talking about Prince Harry of England’s ass? I am not anymore interested in seeing his ass than his granny’s and we all have one and know one or two so let’s just move on, shall we?
ihavebreastcancerblog 