BRCA: will it be a simple matter of genetics?

Posted on July 20, 2012 by carla

Today was another kinda sorta big day.  I went to Penn Radnor to meet with a genetics counselor.

Yes, the BRCA gene test.

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.

Anyway, I found this snippet from 6ABC:

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.

 

 

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ebb and flow

Posted on July 11, 2012 by carla

Ebb and Flow by Linda Dubin Garfield

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.

Take this one post:

To Tell or Not To Tell June 6, 2012

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!

Read Linda’s breast cancer blog HERE .

Check out Linda’s art HERE.

 

 

 

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boob alert: another bogus breast cancer charity – breast cancer prevention fund

Posted on July 7, 2012 by carla

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:

Conflict of interest between Everett charity, telemarketing co.

                            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”.

She gave me a web address www.breastcancerpreventionfund.org .  The website is (what a shocker) somewhat uninformative.

I also checked out what the Better Business Bureau had to say.  As soon as I saw “did not disclose” I had read enough.

And does Guidestar seem entralled?  Not really.  Guidestar put a clue to their financials on their website:

And under “Personal Reviews” Guidestar has like FIVE pages of negative comments about this “charity”:

SCAM ALERT:

May 9, 2012

    Scam alert. http://everett.komonews.com/news/business/688849-conflict-interest-between-everett-charity-telemarketing-com Raised $17.5 million, paid himself $10.5 million, gave out $3.5 million

March 15, 2012

    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.
Don’t be fooled by this scam – over $17M in donations but only $3.5M for mammograms while Legacy Telemarketing, owned by BCPF’s president is paid over $10M!  See http://www.komonews.com/news/problemsolvers/133675028.html.
January 9, 2012
    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”.

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Posted on July 4, 2012 by carla

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 :<)

carla's avatarchestercountyramblings

Neighbors Main Line/Philly.com:  

Posted: Tue, Jul. 3, 2012, 7:28  PM

Eat locally: Farm fresh fruits and veggies from your own  ZIP code

Read more by clicking HERE 

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!

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politics of the penis: don’t vote for boobs like chris collins

Posted on July 4, 2012 by carla

You know, I was wondering what I was going to write about on this blog as I hadn’t updated recently. And I have found my topic – not politics of the uterus, but politics of the penis.

But first, a health update on me. I went to see my oncologist who says (in short) I am doing really, really well. We discussed the BRCA test, and a genetic counselor will be calling me. We also discussed the Tamoxifen generic switch, and since I am back on the Teva generic versus the Mylan generic I am MUCH better.

But now for the boob who apparently doesn’t know squat about breasts or breast cancer. And yes, he’s a guy, and so it is officially politics of the penis.

There is this guy in upstate New York who is by all research, a political zealot. And I am saying this as a woman who is a registered Republican.

His name is Chris Collins and he is running for Congress in New York’s re-drawn 27th Congressional District.  It covers a chunk of Buffalo and other upstate NY counties.

So Mr. Collins (he doesn’t deserve this respect, truly, but oh well) ran for Erie County, NY Executive first.  When the Congressional district up there was redrawn, apparently he decided he was in fact the Messiah of New York State.

I would never in a million months of Sundays ever have a political nitwit like this on my radar if he hadn’t done one thing: made a statement that men do not die of prostate cancer and women do not die of breast cancer.

I beg to differ.

I lost my father, whom I miss every day to metastatic prostate cancer.  I am a breast cancer survivor, who has watched the survivor ranks shrink even in the year plus since my own diagnosis and surgery last June.  This time last year I saw women fighting to stay alive with breast cancer when I was receiving my radiation treatment.

And yet, this man from upstate New York can make a broad statement like this?

What planet is he on?  And what planet are all of the rest of us on if we allow him to get elected?

Women and men out there, cancer doesn’t see political parties or battle lines and it does not discriminate.  No matter who we vote for, we should not vote for candidates like Chris Collins.  In my humble opinion, his statement is tantamount to saying alcoholics and addicts aren’t alcoholics or addicts at all, it is just in their head.

I am not getting into the topic of Obamacare, because truthfully, I don’t know that it will ever do anything for me.  I also realize that until the insurance companies themselves experience some meaningful reform, both sides can do whatever they want and say whatever they want, it won’t really matter.

I  am concerned about candidates like Chris Collins who says crap like people don’t die from breast or prostate cancer and he not only I *think* has at least one daughter, he has a SISTER who is a breast cancer survivor!

Politicians like Chris Collins are dangerous.  They come in conservative and liberal varieties too.

I am thankfully represented by a good congressman.  But if you live in upstate New York, please, please, please do not send this boob to Washington.  There are enough boobs there already.

Just say no to Chris Collins.  And Republican strategists?  As a Republican I am saying, please don’t presume we’re stupid.

We do not need candidates like Chris Collins to make it to Washington.  Heck I wouldn’t vote for him for dog catcher.  He would probably say animal abuse and puppy mills were fairy tales.

And I am saying it one last time:  cancer doesn’t discriminate.  It doesn’t care about your political party or political belief system.  Politicians like Chris Collins are dangerous, and quite frankly, he gives Republicans and conservatives a bad name.

Let the angry man stay in New York State.   There is enough stupidity and negativity in Washington already.

Now read up on him:

Chris Collins: ‘People Now Don’t Die From Prostate Cancer, Breast Cancer’

The Huffington Post   By Elise Foley
Posted: 07/03/2012  3:13 pm Updated: 07/03/2012  5:14 pm

GOP congressional candidate Chris Collins knows health care is expensive these days, but he argues it’s for good reason: People are no longer dying from deadly forms of cancer.

“People now don’t die from prostate cancer, breast cancer and some of the other things,” he told The Batavian in an interview that was flagged Tuesday by City & State NY. Collins was discussing his desire to repeal Obamacare….In fact, a lot of people do die from breast cancer and prostate cancer, despite advances in treatment. An estimated 577,190 people in the United States will die from cancer this year, including about 39,920 deaths from breast cancer and 28,170 from prostate cancer, according to the American Cancer Society.

Chris Collins wants to go to Washington to restore the American Dream

The Batvian Submitted by Howard Owens on June 24, 2012 – 9:37pm

 ……Collins also argued that modern healthcare is expensive for a reason.

“People now don’t die from prostate cancer, breast cancer and some of the other things,” Collins said. “The fact of the matter is, our healthcare today is so much better,  we’re living so much longer, because of innovations in drug development, surgical procedures, stents, implantable cardiac defibrillators, neural stimulators — they didn’t exist 10 years ago. The increase in cost is not because doctors are making a lot more money. It’s what you can get for healthcare, extending your life and curing diseases.”

City & State: The Notebook:

Chris Collins: People No Longer Die From Prostate, Breast Cancers

Written by Chris Bragg on July 3, 2012. Posted in Blog Time posted: July 3, 2012 1:06 PM-

A reader points out a rather interesting passage from Republican Congressional candidate Chris Collins’ recent interview with The Batavian.

In discussing his desire to repeal the Affordable Care Act, Collins appears to state that the reason health care is so expensive in the United States is that people no longer actually die from prostate or breast cancers.

From the article:

“People now don’t die from prostate cancer, breast cancer and some of the other things,” Collins said. “The fact of the matter is, our healthcare today is so much better,  we’re living so much longer, because of innovations in drug development, surgical procedures, stents, implantable cardiac defibrillators, neural stimulators — they didn’t exist 10 years ago. The increase in cost is not because doctors are making a lot more money. It’s what you can get for healthcare, extending your life and curing diseases.”

But Adama Brown at Daily Kos has already pointed out that this, of course, is false:

“National Cancer Institute figures show a very different story: Breast cancer kills about 40,000 women a year in the US. Prostate cancer kills about 30,000 men.

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the forgiveness project

Posted on June 18, 2012 by carla

When I was going through breast cancer, the early stages, my friend Barb gave me this wonderful book called The Forgiveness Project.

And when you are a woman whose life has been touched with breast cancer, you learn to forgive. Or your head might explode.  So slowly, I have learned a little better to forgive and release.  It is not easy, because like it or not, it is in a woman’s nature to hold onto things.

So as I adjust to my new life and new community, I am meeting new people.  Some of these people have sought me out because of my writing and photography.  One woman did so because of the photos and write-up I had done on a local farmers’ market she put together.  That happened shortly after I moved and I was thrilled!

But then what she had asked to use of my work never appeared. So I sent her an e-mail.  I received a note back saying she had been busy with her kids blah, blah, blah.
The next time I saw her at the market, I stopped to say hello.  She pulled me aside and told me she was sorry, but she couldn’t link to my blog because of something I had written that she was uncomfortable with.  I said that was no problem, that I understood.  That was the truth.

The next time I saw this woman she was hyper saccharine sweet.  And quickly moving as if she actually spoke to me she might catch cooties.  It was like Stepford PTA mom overly caffeinated.

Then I saw her this past week at the market.  This time, when I stopped to see her she was chilly, dismissive, and in a passive aggressive way, impossibly rude.  She was this way around other women and that was upsetting and embarrassing.

So I sat on this a couple of days, and sent this woman a note.  I admire her for what she has done but I thought it might be helpful if she learned a little about me. You know, so she wasn’t always so obviously uncomfortable around me?  After all, I am not looking for a new BFF, just the ability to be pleasant should our paths cross.

Needless to say, a few days have passed and nary a reply. Or acknowledgement. Or apology. I didn’t really expect one from this professional PTA mom.  I am different, have arrived chez parenting later than most.  Me, I wouldn’t be all judgey on that, but I am simply not what this woman is used to.  A friend of mine describes the type as Parents Of OneUpsManship and the Self Proclaimed Mothers Of The Year.

So yes, I did feel like writing about this, and I will continue to be pleasant to this woman when I see her, because that is how I was raised.  Besides, what does being the way she is to me right back at her get me?  Absolutely nothing.

The reality is, this is not someone I need in my life and I found her behavior upsetting and now it’s done.  It is surprisingly easy to forgive someone who is limited for being stupid.  After all, in the big picture, they retreat quickly to the background…from whence they came.

Life is funny, and seriously, post breast cancer you just learn to let shit go.  Take another woman I ran into recently who I know through mutual friends.  She is recovering from some health issues and an operation.  Her doctors want her to rest more. But I think part of her is afraid to, because when she is by herself sometimes she cries.  I asked her why she was crying and the response was something about the often unfairness of life.  I think she thought I was a little nutty because I said why cry all the time when you could smile because you are alive?

Life is what you make of it, and as adults we do need to learn about forgiveness. Not in a guilt everyone around you with the word kind of way, either. In more of a catch and release and learn to be accepting kind of way. Easier said than done some days, yes.  But mostly attainable.

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once you have faced a diagnosis….you know …..

Posted on June 12, 2012 by carla

I am part of this page on Facebook called Philly Social Media Moms (as a SMIT, or Stepmother in Training, I was allowed in!)  Anyway, this post last night jumped off at me.  It said:

Hello ladies! One of my dear friends was just diagnosed with breast cancer & she has been nursing her infant daughter.  She had to start “emergency weaning” and is in need of donor milk. I know many of you have connections with the breastfeeding community. If you know of any groups that might be interested in helping, could you contact me? Thanks so much!

O.k. so I have no experience with the whole breast milk thing because I was never able to bear a child even before the breast cancer and treatment of it all, but the “just diagnosed” grabbed me.

So I went hunting for this woman’s blog.  I found it after I found her business website.  It’s called Tales of  a Tattoo Mom  .  And I found a post I would like to share:

Friday, June 8, 2012

guess now this blog should be called Tales of a Tattoo Mom with an extremely aggressive, invasive breast cancer. A biopsy came back the other day, and it says that it’s aggressive invasive ductal breast cancer poorly differentiated. I’ll post the pathology for you to see.

I’ll share this with every one. I can’t do this alone.

My lactating is coming to an end. As I type I have cabbage leaves on my engorged breasts in hopes to slow the milk production. Unfortunately the hormones that cause breast feeding might feed the cancer. I didn’t believe that at first. I wanted to breast feed my little girl until she was old enough to lift my shirt and suckle on her own if she wished to do so. I wanted her to self wean when she was ready, but everything has changed. Now I can only hope to be around when she’s that age.

I’m reaching out to lactating mom’s out there to acquire donor milk, and so far it’s working. South Jersey/Philadelphia has an amazing network of breast feeding women. Social media has helped ia greatly especially in the birthing, breast feeding, and babies Facebook group. Thank you, wholeheartedly.

We now have our own Facebook page called, Human Milk for Joslyn. Please add if you want to help even if it isn’t donating milk. We are looking for people who can be couriers, supply sterile bags, or even bake oatmeal cookies for gals to build up their supply.

We also have a group on http://www.lotsahelpinghands.com and Team Tegan. Soon enough we’ll be putting duties up there you can sign up for. We’ll need sitters, drivers for rides, people to cook meals, clean, do errands, walk our dogs. If anyone does healing services and wants to donate time, there’s a massage table at the house already. Prayer chains are welcomed with open hands.

We’re also accepting monetary donations. I’m unsure how much I’ll be able to work through this time, and we depend highly on my income for our bills and rent. Because I’m self employed, I’m not eligible for any government assistance. There will be benefits held in MA, NJ and possibly Fl and Philly. Also we’re accepting Paypal donations via my website, http://www.teganink.com. In addition to that you can join our human tribe. It’s a necklace with a ‘T’ on it.

 

Breastfeeding I have no experience in, but feeling the room spin when you get a breast cancer diagnosis?  That I know all too well.

There but for the grace of God (go I).

Wow.  This really hit me.  And I can feel how she is swirling.  As a stepmother in training, when I was going through treatment after my surgery, I felt that very human desire to see my boy grow up.  Even if he wasn’t technically mine, he is still part of my heart.  So I get this, and can’t even *imagine* what it is like when a  mother like this with wee ones has to face breast cancer.

I don’t know this woman Tegan Beyer at all, wouldn’t know her if we crossed paths on the street.    But I can tell you, I get the whole how-are-we-going-to-pay-for-it-how-are-we-going-to-do-this….heck I am still paying for it (the radiation treatments)  thanks to Lankenau screwing up my billing for a year.

This woman needs her friends to Driving Miss Daisy her.  As my regular readers know, my  friends did that for me this time last year.  They took the list making out of my hands, and the errand running, etc.  They made me cede control and concentrate on getting well and it made all the difference.

Of course reading about something like this also raises for a brief moment the “what if it comes back” boogeyman in my head.  As I sit here typing on a rainy day, I am so grateful for my life, my friends, my sweet man, but still…once in a while in the deep quiet, I fear.  That occasional fear  is another reason why I need to learn to filter and sometimes tune out cancer horror stories – that sounds awful and it sounds selfish, but to an extent I think for a survivor it is self-preservation.

With this beast called breast cancer you need to learn to separate the sympathy from the whole empath of it all.   Right now, when I hear a new recounting of someone else yet again with cancer, I almost feel it a little too sharply for lack of a better description.  I am only a year out, after all.  I don’t let that sharp felling bog me down, but I still feel it.  As time passes, hopefully I won’t feel it so vibrantly.

So Tegan Beyer,  here is a wish and a prayer coming your way.   I don’t know you, will probably never meet you, but I get where you are going….since I did a version of your journey.  Stay positive.  Stay strong.   Love.

I am so glad to be on the other side of breast cancer.  I hate to say it like that, but looking back, there are some days I do not know how I did it.  And I don’t want it again.  Ever.

Sign me so over cancer.

Sending peace and love out to you all.  If you would like to help Tegan, find her via her blog Tales of a Tattoo Mom and Tegan Beyer: Tattoo Artist on Facebook.

 

 

 

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letting go

Posted on June 9, 2012 by carla

Since my diagnosis for breast cancer, and subsequent surgery and treatment, I have learned how to an extent your life becomes an exercise in letting go.

That dawned on me the other day.

Part of it comes with the acceptance that one way or the other you have become marked with a disease all women fear.  You have to just let go so you can survive and learn to deal with all that breast cancer entails.

Then you let go of other things including if you are wise any societal pre-conceived notions of beauty.  An example of that is not looking at my left breast as damaged.  Yes, it has a slightly different form then it did a year ago, but I see in it, the beauty of my survival.  For all those who were trying to help by telling me about this plastic surgeon and that plastic surgeon, I thank you, but no thank you.

You also let go of people through this process.  You don’t want to, but it happens.  Some people aren’t your choice and it hurts.  First there were the people who wanted my cancer to be all about them.  I let them go.  No muss, no fuss, I simply evaporated.  Then there were the people who wanted to be depressed for me.  I let them go in the short term, because I did not want any negativity getting in the way of my recovery.   Those letting gos may have been a wee bit awkward depending upon the situation, but they did not hurt.

One letting go that hurt has to do with  a woman I used to work for ten years with whom I thought was my friend.  I was an ear and a shoulder throughout her divorce and various and assorted other trials and tribulations, but she became one of those people who once you are out of sight, you were out of mind.  I have remarked before that I had this friend and when I told them I had breast cancer, it was like I told them I had a hang nail.  Over a year later, I have never heard from her again.  And I did not ask her to do anything.  Apparently breast cancer is catching and I did not know it.  So I have let that friendship go.    I wish her well, but the way she was at a time when I needed my friends, hurt.  So it’s done.

Now as my life has changed yet again, and my sweet man and I have begun a home together as our life moves forward together, I am finding myself facing that letting go thing again.  When I first moved and a few weeks prior to my move there was a period where I kind of  went to ground.  I had to.  I had to sort, purge, donate, pack.  I had to decide what went to storage, and what came with me.   Address changes all across the board, plus juggling all my post-surgery and post-radiation appointments.  Ultrasounds, mammograms, breast MRI, appointments, and packing to move and moving.  Yes, I went underground.

Now as I settle in more and more every day, I am starting to surface again.  Most of my friends understand this, but some don’t.  And there are some people I am learning are doing the out of sight out of mind thing with me now that I moved.  But I expected that.

There is one more letting go that I think is happening.  This is the one that makes me sad, but it is beyond my control.  It is the one sister I stayed connected to after the ex-factor left.   She is the only one of his siblings worth a damn, but I guess I did not have the time to put into our relationship once I started to pack and move. We had no argument, but I must have missed a cue about something. Or it has nothing to do with me. I simply do not know.

She has stopped talking to me, and cut all communication.  I don’t know really why, we haven’t spoken about it, maybe she has reconnected with my ex, her brother, and others of her family.  If she has done that, family is important, and that is o.k.   This is actually someone I don’t want to let go of, but maybe it is just going to happen anyway.   My life is different, and maybe that is part of it.  I don’t know.  I wish her well, whatever she decides.  I would never shut the door on this person as she was and is important, but I can’t read minds, either.

Life is funny though, and I am discovering also a series of circles.  We had dinner with a friend from high school last evening.  He was someone who was very close to my sweet man in high school, and as nice as it was for all of us to be together, it was even nicer to see the two of them reconnecting as adults.  It was just one of those things when they went their own separate ways.  And now life, being what it is, the circle has come around once more.  The older I get the more I am amazed that the bonds we formed way back when in high school and earlier remain the strongest.  Maybe it’s the commonality.

All in all, it’s interesting seeing the next chapter of my life unfold.   I am enjoying it thus far, although I will admit this picking up parenting stuff is hard some days, awesome all days.

And here is I am into year two, counting down the days to cancer free year two.  And I am sending out lots of resumes… and planting my garden…and cooking….and taking lots of photos….drinking my matcha….meeting new people.

I guess when you learn to let go, you do open yourself up to possibilities.  I have a follow-up with my oncologist in a couple of weeks.  I want to talk about the BRCA test and see if my insurance will pay for it.  I am also going to talk about the Tamoxifen and find out how I can avoid being substituted between generics without my permission.

And now a final word.  Maybe it is just me, except I don’t think so.  I think it is something all of us BC gals feel, but we above all others are hyper sensitive to tales of other people falling ill with cancer.  You see, we’ve been marked.  So we can all be as positive as possible, but sometimes those stories of others are hard to hear.  It is not that we don’t want to know when someone is sick, but we hear these bits of news with slightly different ears.

I also try not to be annoyed when someone who has not had breast cancer and is not a medical professional tells me or my sweet man about risk factors with Tamoxifen, the side effects, and fun facts about breast cancer.   But….Hello? We are living it.   Me directly, he as my life partner.

Life rolls forward.  Happy Saturday, all.

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errr….pink humor coming your way

Posted on June 2, 2012 by carla

Is it really all about the boob, ladies?

When you have another night of no sleep because you have to suck it up and get through the switch in generic Tamoxifens until the next refill insurance will pay for you get silly. 

So some of my local BC gal pals know I have been taking some crap from some harpies on one of my other blogs because I found their choice of summer hats rather odd.  So my one friend started me on boob quest.   Trust us, you have absolutely no idea how many people knit boob caps on Esty. And all BC gals know, once ya been there, it’s all about the boob.

And if you don’t want hats, there are scarves and pillows:

 

 

 

And I suppose we could commandeer the old boob cake that I have actually seen given to friends’ husbands on milestone birthdays.  There used to be a bakery down around the Old City section of Philadelphia that was famous for their boob cakes.

And if all else fails, there is boob soap and boob ear-warmers:

 

 

 

 

 

 

And rest assured, no, I need none of these products…but thanks :<}

 

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one year.

Posted on June 1, 2012 by carla

Today is happy, happy, joy, joy in the scheme of things!

One year ago today I had my breast cancer surgery.  A lumpectomy a/k/a partial mastectomy.

One year ago at this time I was in recovery at Pennsylvania Hospital, and hopefully wasn’t drooling on anyone post surgery.

One year ago at this time I was wrapped up like a mummy and could  NOT remember if they told me coming out of surgery that I still had a left nipple or not….but I can still tell you to this day the fabulous necklace and cool clogs my surgeon, Dr. Dahlia Sataloff was wearing!

“It’s not whether you get knocked down. It’s whether you get up again.”~ Vince Lombardi

So here I am, still 1 6/8 boobs and a year later, yes my left breast is smaller and slightly lopsided, but I can deal with it.  My scars have virtually fades away to nothing because my surgeon quite frankly has magical hands.

I have been waiting for a year to write this post, and today is a very big milestone to me.  I count June 1st as my official cancerversary.

I have learned a lot about others , as well as myself.  I have learned a lot about life and love and what really matters.  In the midst of breast cancer, I also rediscovered a lot about myself and parts of myself I thought long gone.

“This above all: to thine own self be true”  

~ Character: Polonius/Author: William Shakespeare

My first post-surgical and radiation mammograms, ultrasounds, and MRIs are all clear!

I will tell you that since I had my surgery, Penn no longer will bill out co-pays, which means that the expensive ones like MRIs and such have to be paid up front.  I think if a patient has a clean payment history with a hospital system that is a bit unfair.  And I am having issues with a switch in generic Tamoxifen , but lordy overall, minus a couple of bumps, what a difference a year makes.

This time last year I was a lot more scared then I let on.  Being told you have breast cancer does sort of suck the air out of the room.

Dost thou love life? Then do not squander time, for that is the stuff life is made of. ~ Benjamin Franklin

But here I am.  I stuck to my guns of remaining positive in the face of the big C, and I have the most amazing support system near and far.  I also have the most amazing doctors and nurses who have cared for, and continue to care for me.   A big thank you to Dr. Samantha Pfeifer for pushing to get my lump tested, Dr. Dahlia Sataloff for my surgery, and thanks to Dr. Marisa Weiss who did my radiation.  Up ahead of me, I do have to get the BRCA gene test, I think that is important.

My life has changed so much in a year, and the amazing negative breast cancer is?  Well it has ended up being a positive.  A couple of hours from now, my sweet man was bringing me home to his home to heal from surgery.  A year later? I live here and have my own family unit.

They say God never gives you more than you can handle?  Well, I finally believe that.

As I sit here, with a breeze coming in, looking out at my garden and my plants starting to bloom I am grateful…reall grateful.  I have made it one year so far, and that brings great peace to me.

To those of you out there just beginning this journey, hang tough.  If I can survive, so can you.

To those of you out there who support breast cancer survivors, thank you.  Your positive reinforcement helps more than we as survivors can ever articulate.

A special shout out to Gwen M., Nicki D., Pamela B., Ilene S., Liza B., the Eileens,  and all the others who are among the fabulous survivors and previvors I know, thank you.  The Driving Miss Daisy League?  The Karens?  Regina and Lynn? Sherry? The Lindas? The Barbs? My sister? You ladies continue to inspire and are awesome. And of course … lots of love to my sweet man , as he is the best a girl could ever ask for.

Wow. One year.  Tomorrow I start working on year two.

Take life and live it folks.  It’s not for the meek and faint of heart sometimes, but wow, look something like breast cancer in the face and you sure do appreciate it more.

Love you guys!!  Onward and upward!

“Go confidently in the direction of your dreams. Live the life you have  imagined.” ~ Henry David Thoreau

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