I was in a mood yesterday for sure, and although none the less frustrated , I have a lot to be grateful for.
My photo of the day is one perfect November rose.
Things could be a lot worse. I have my life. I am a survivor.
“Thou that hast given so much to me give me one thing more, a grateful heart: not thankful when it pleaseth me, as if Thy blessings had spare days, but such a heart whose pulse may be Thy praise.”
― George Herbert
This post has nothing to do with breast cancer.
Or maybe it does. I don’t really know.
I have decided it is easier getting a referral for one of my plentiful breast cancer related doctor appointments then it is getting the United States Postal Service to deliver my sister’s birthday present via Priority Mail in NYC.
I sent my sister a birthday gift priority mail October 21st.
I paid $13.45 for the Priority Mail privilege to do so.
On October 25th when it still had not arrived, I put it in for re-delivery on October 26th.(so much for that 2 -3 day delivery guarantee or whatever, right?)
Nothing. As in here it is October 31 and for some reason those shlubs at Gracie Post Office 10028 seem unable to remove their thumbs from their asses and deliver a package that was paid for and insured as a priority. They suck. They eat, not deliver mail. They have the worst customer service. My sister actually went to the post office and they couldn’t even give her the package which was only addressed to her so why rush?
And then today I get a customer satisfaction survey. I think I went from 0 to 500 in about 10 seconds I was so pissed off. I filled out the survey and then called and spent 20 minutes going through phone prompts before I got a professionally soothing USPS.com person who swears he cares about my Postal Plight and claims they will re-deliver tomorrow.
Snowtober was merely a nesting event for me….if you discount my sweet man’s car getting stuck 7 feet in the air on a lift in a garage when the power went out.
A few days into Tamoxifen I would say I am definitely crabby, but that could just be the United States Postal Service, a long PINK month, and a sudden inundation of political mailer junk mail and commercials.
How do career politicians keep getting jobs and everyone else (myself included) cannot? Yep, a job I had been in the interviewing process for since July told me last week I was in essence, second best.
After all I have been through in the past few months I am just frustrated.
Frustrated.
At least tomorrow is November 1st which means no more Pinktober.
Speaking of Pinktober, remember the funky NJ charity that was cold calling me and I could get any answers from them as to why they were calling and what exactly they did? Well the Attorney General’s office in NJ sent me some documents on them . I say save your charitable contributions for a real breast cancer charity.
Happy Halloween. I have neither tricks nor treats, I am just here.
Today is not only the first day with tamoxifen in my system, it is also six months since I received that phone call saying I had breast cancer.
An anniversary, another milestone, a new step forward. Lordy, must some days be so emotionally stacked?
I enter into Tamoxifen with trepidation and some fears. When I brought the bottle home,
I sat it on the dining room table and stared at it a couple of hours.
Like it was a pint-sized Pandora’s box. But the alternative is unacceptable.
I will tell you that I took it at 12:02 a.m. (couldn’t sleep) and that a little while ago I had a hot flash. They had stopped a month out of radiation which was October 13th, 2011.
Overnight the weather has changed to the cool crisp of fall and leaves turned.
And oh yes, I received a Groupon for Botox. Thanks, I will pass on that.
And so it begins, people. Today, six months ago I was really, really scared and facing great unknowns. Today I have a lot of that behind me and am starting the next five years. May God be good to me and a thank you for giving me the strength to be positive and to have gotten this far.
I am bigger than this circumstance. My thoughts will take me to a place of peace. I speak calm and oneness. I am a champion and my victory is already on the horizon. My love for life anchors me in safety. My thoughts will take me to a place of peace.
Well I started out today waking up and thinking it was Friday, an
d it’s only Thursday, so I will admit I am cranky.
But then I saw this thing on my Facebook wall – another YOU MUST BUY something pink thing, and well, is it November yet?
Forget about every day expenses, how am I supposed to be paying for the costs associated with breast cancer treatment and with being a breast cancer survivor who will have years of very close maintenance and meds and tests for years to come? I am funding my own Breast Cancer Mardi Gras (you know, flashing the rack for co-pays, not beads), so no offense, but charity begins at home. And I am so jaded on all this by almost the end of Pinktober anyway.
Pure Barre is a women’s fitness place – a franchise opportunity. So they opened one in Wayne apparently in the shopping mall formerly known as Spread Eagle Village (it took a couple of decades but they finally got the implication and changed it to a more friendly title of Eagle Village Shops.)
So they want you to buy a pink tank top? They turned their website pink for October? (Sheesh technically my blog is pink every day because I like my azalea photo as a background.) Well I checked their blog and I checked the charity section of their website and can’t see what charity they are donating to. Sorry but this month that has been a big screaming pink buy this and that and when you don’t see where proceeds are definitively going to, it’s really irritating.
The buy pink everything is bad enough, but in my opinion it’s PR101 that if this Pink Barre place is going to put it out there they are supporting breast cancer, they should say “proceeds of this tank will go to X charity.”
But that is not how this is translating. There is also say they are partnering with Splits59 which seems to manufacture fitness apparel? Now Splits59 says on THEIR website the proceeds of the sale of this tank will benefit the Breast Cancer Research Foundation. One teeny detail? Splits59 says 10% of the sales of this sale will go towards the Breast Cancer Research Foundation. See what I mean? Pink Barre says 100% profits will be donated to the “cause” and Splits59 says 10%, and somewhere between the two lies the truth.
My opinion is it’s a $48 tank top that doesn’t even seem like it has a shelf bra and it has the irritating “suggested” wearing of showing my support for the fight against breast cancer gets a pass.
Why does that bother me?
Because to imply that I as a breast cancer survivor do not support the fight against breast cancer unless I spend lots of money on pink crap I will never wear and that I am NOT showing support unless I buy these products is offensive. What the hell do they think women like myself write about this disease and experience for? Because we have nothing better to do? We aren’t just writing this for ourselves and out loved ones but for the others out there going through this and those yet to come. That is but one way we contribute. I also think it’s wrong to guilt people into buying things they might not be able to afford. Breast Cancer ain’t cheap.
If say Pink Barre was going to offer women going through breast cancer and those who were survivors a couple of complimentary fitness classes during October, with then say also offering a percentage of proceeds to a breast cancer charity if they then signed up or bought a t-shirt or something after, well THAT would be something I would think was pretty cool. But that is not what I see – I see a pitch to buy a tank top at the end of October.
Pink Barre and Splits59 in my opinion don’t need us to join any fight, but they seem like they want us to spend money. Well when they line up to pay my health insurance premiums or spot me a few co-pays, I will consider it. But right now, the reality of life is my most inexpensive co-pay is $50, so when it comes to paying that and buying a $48 tank top, what do you think I am going to choose?
In other news, full steam ahead with monitoring on the Tamoxifen. Menopause here I come…
I will step off my soap box in a lady-like manner now. We the survivors of breast cancer are beautiful without pink crap. Remember that.
No pink plastic crap was harmed in the writing of this post.
Two New York Times articles are a must read for women. One is on the benefits of radiation and one is another do women really need mammograms article – again, both from the New York Times.
With regard to mammograms, a mammogram did not save my life because my cancer did not show up as abnormal on a mammogram OR a breast ultrasound – I needed to get a needle biopsy before that happened. Then of course I was able to get a breast MRI which did show things…but how many steps did I have to go through? That was the nature of my cancer, but not so for every woman.
All that aside, I will not turn down my right to have every test I can get to screen me from breast cancer. Women in the United States need access to what women in Europe now have access to – those 3D machines from Siemans – the breast tomosynthesis machine or whatever.
Women deserve access that is affordable to every test they can get to save their lives. Period. If there are women out there dumb enough to not take care of themselves, that’s on them. But me? I am a survivor and I want to live a long time.
No, a mammogram is not a cure, but it is a tool that women should have access to. I fear this will open another conversation where then women will NOT be able to have tests. We’re not sheep here.
The second article on radiation – as in the benefits after breast cancer surgery. After all my weeks in the giant microwave this was nice to read.
October 24, 2011, 4:01 pm Mammogram’s Role as Savior Is Tested
By TARA PARKER-POPE New York Times “WELL”Has the power of the mammogram been oversold?At a time when medical experts are rethinking screening guidelines for prostate and cervical cancer, many doctors say it’s also time to set the record straight about mammography screening for breast cancer. While most agree that mammograms have a place in women’s health care, many doctors say widespread “Pink Ribbon” campaigns and patient testimonials have imbued the mammogram with a kind of magic it doesn’t have. Some patients are so committed to annual screenings they even begin to believe that regular mammograms actually prevent breast cancer, said Dr. Susan Love, a prominent women’s health advocate. And women who skip a mammogram often beat themselves up for it……“You can’t expect from mammography what it cannot do,” said Dr. Laura Esserman, director of the breast care center at the University of California, San Francisco. “Screening is not prevention. We’re not going to screen our way to a cure.”
Benefit in Radiation After Breast Cancer SurgeryBy DENISE GRADY
Published: October 19, 2011 New York Times
Radiation treatment after surgery for breast cancer significantly lowers the risk that the disease will recur in the breast or spread lethally to other parts of the body over the next 10 to 15 years, researchers say.
The new findings mean that radiation prevents recurrences for a longer time and saves more lives than was generally recognized, said Sarah C. Darby, a professor of medical statistics at the University of Oxford and an author of the report.
These reassuring results, which were reported Wednesday in the British journal The Lancet, are based on an analysis of 17 studies involving 10,801 women in Europe, Canada and the United States. All had cancers small enough to be treated with breast-conserving surgery, meaning a lumpectomy or other procedure to excise the cancer without removing the entire breast. Women were picked at random to receive radiation therapy, or not, and followed for a median of 9.5 years. Some were tracked for as long as 20 years.
Over all, radiation reduced the risk of a recurrence during the first 10 years after surgery to 19.3 percent from 35 percent, and reduced the risk of death from breast cancer to 21.4 percent from 25.2 percent in the first 15 years.
“It’s only been relatively recently realized that radiation has such a big effect on mortality,” Dr. Darby said, explaining that this positive outcome was at first not recognized because it takes five years to show up.
Life continues to truck along with it’s twists, turns, and occasional hiccups, but all in all, it’s not so bad considering the past few months. The future is looking forward, so I can’t complain.
God closes a window, and opens a door.
I still wait to hear from what the result of the great tamoxifen pow-wow will be. That is a little annoying I must admit. My sweet man laughs every time I tell him patience is a virtue I have yet to discover.
So I saw a friend today who is a little younger. Not yet 40 so every mammogram she pays extra for thanks to the convoluted health system in this country. She discovered a few months ago a lump in her breast and I swear I can’t decide who is the larger jackass – her local hospital “breast expert” or her insurance company.
She’s been living with the lump or whatever it is and is doing the co-pay-please-approve-me circus. There has been no determination of whether or not the lump is anything or just a benign thing that may or may not fade over time but her breast expert told her basically just to take evening primrose. Maybe they’ll take it out, maybe they won’t, she has dense breasts, and oh yes, her insurance company won’t pay for her to have a second opinion.
HUH????? They are telling her this in October AKA Breast Cancer Awareness Month? Can you say boobs? (She’s getting a second opinion anyway. I would too.)
And another woman I know was afraid she had something wrong and went to her primary care who it ends up not only had her juiced up full of meds she really didn’t need, but sent her to a neurologist who is quick possibly completely quackers.
I just think it’s crap the way women often have to fight for the most basic stuff like decent healthcare. And I don’t see lawmakers moving particularly fast to deal with these issues. Certainly not Mr. President. BTLA is how I am going to sum up the Obama years I think when all is said and done. (Not that I would have an opinion or anything, right?)
And then tonight I got a e-mail from another friend who lives out of state:
As you know mom sent us the article you wrote in the paper. It was a wonderful article that told your journey from beginning to end.
It is a lesson for all of us no matter what age to get our mammogram or when we feel something in our breast to get it checked out.
After reading your article and hearing the story of Guilana Rancic, I am going to make an appt with the GYN and mammogram.
You had a great support system to help you get through this! Next time we are in the area we will let you know and so we can meet for dinner!
Congratulations on being a Breast Cancer Survivor!
How awesomely nice is that? It made my whole day.
The month of endless vomitorious pink (sorry, but it way too much) is almost over, but ladies, through all the feather boas and hats and et cetera there is a take home message: take care of your girls and take care of yourselves because if you wait for our healthcare system or elected officials to be more proactive, honestly, I don’t see it happening in our lifetimes. We have to be proactive for us.
So who else keeps getting calls from a charity called Breast Cancer Survivors Foundation out of Roselle Park, NJ?
They have an outfit making charitable solicitation calls called “Outreach Calling” that may have a website HERE but I was told by the supervisor of friendly Ann Marie who called me today (his name was Jeff) that they were located in NJ – he gave me a number to them of 973-999-6091 )
The helpful solicitor could tell me nothing about the charity other than it was based in Roselle Park NJ and gave a toll-free number to call 1-800-930-1220. The other number I found on the charity is 908-241-2288. These calls always go to an answering service in Madison, Wisconsin.
So I went looking for a webiste on this charity. I posted my favorite photo off it of a woman with big huge fake boobs feeling herself up in a purported self-exam and sporting lots of my favorite things – pink plastic bracelets. As a matter of fact all their stock photos show women with large perfect boobs which is sooooo realistic to us survivors, eh?
I went to Guidestar for information – not much to be found and interestingly enough no IRS form 990s to view. So I called the consumer/charity division of the Attorney General’s Office for the state of New Jersey -973-504-6215. And interestingly enough I found something on them on the State of Washington’s website . This site says in 2010 they had revenue of $531, 041 and expenses of $479,111 . They also listed the paid fundraisers who received money from them: Preferred Community Services, Inc., Non-Profit Services, Inc., Outreach Calling, and Safety Services, LLC
The woman in the NJ AG’s office was very helpful. She walked me through an online public records request (I love sunshine!!) and told me that as per their records the “charity” has been in biz since 2009 and as of their last filing with the State of NJ 99.96% (I think I heard that right, but I will know for sure when I get the records) of what they take in goes to FUND RAISING. No real money towards programs? And they are fundraising for breast cancer survivors? To what end?
I am still digging on these people, and my gut check is negative on them, so I say once again if you don’t know the non-profit and don’t know what they do and the solicitors seem sketchy on the phone, listen to your instincts and ask to be put on the DO NOT CALL LIST.
Breast cancer is hard enough without wading through charity calls from people who can’t tell you where they got your full name and phone number. And oh yeah, one other thing. When you plug the charity’s address into Google (443 E. Westfield Ave Suite 1
ROSELLE PARK NJ 07204 ) you come back with a doctor’s office (and some amusing reviews of said doctor). Very curious indeed….because when I called that doctor’s office phone number they gave me the phone number of this Breast Cancer Survivors Foundation to call. They did not seem surprised to get a call for this “charity”. I don’t know what to think….
When I discover more on these people I post what I learn.
Today I had a follow-up with my surgeon. Once again my sweet man and I made the trek to Philadelphia in the afternoon.
I have been going long enough that I have started to recognize the faces: the newly diagnosed, the good news faces, the bad news faces, and the indifferent faces just trying to look cool as they sit often in a solitary way waiting for their name to be called.
While I was waiting to be seen, we saw a young woman who had just had her surgery but who didn’t have the all clear and has to have another surgery. I did not want to pry, but I think her margins post surgery weren’t clean enough, which meant a follow-up surgery.
She was young, pretty and with her husband – she was also quite obviously a young mom. I spoke to her -I couldn’t help it as I recognized that look in her eyes. Not my fears per se, but you start to recognize that unmistakable look of fear meets panic. You can’t help it, and I think every woman goes there.
This woman had a lovely smile when she smiled briefly thru the tears.
Yes, she is facing another surgery and possibly a mastectomy. I had this overwhelming urge to hug a perfect stranger when I looked into her face and saw the look in her eyes. But I didn’t, I didn’t want to freak her out. But we spoke, and I told her one day at a time and she would get through it.
Her husband was so amazing and supportive and as total strangers, my sweet man and I could feel the depth and breadth of their love and commitment to each other. It was almost painful to bear to see such sweetness in the face of their obviously incredibly difficult day.
I told her my name and she told me hers, and in the emotion of the moment, I have now completely forgotten. So if she reads this blog some day, I want her to know I am sending her a virtual hug and that she is in my thoughts for a good recovery and a long and healthy life as a survivor.
When she left an older woman sitting next to her said I was so nice to have spoken to her. How can we not pay it forward here? I couldn’t as a human being have NOT reached out. I remember the fear I had when I was first diagnosed and when I first sat in that waiting room waiting to lay out my surgery, and then afterwards waiting to find out about my margins and lymph nodes and then the oncotype, even being there with my sweet man to support me (and my mother), I would have given anything for one of those women in that waiting room in my earlier days to have said “Hey you can do this.” Maybe a big unrealistic dork moment on my part, but it is how I felt.
All our cancers of the breast are as individualistic as we are as individual women, but you can’t help but get some of the emotions you see play out.
As I sat and waited for my appointment I looked around the room at women all ages and all walks of life with the commonality of this disease. It stuns me to silence every damn time. There were women older than I, some of a similar age and another woman who struck me appeared rather young and came with her mother. This woman’s mother was dozing in her work uniform waiting to go in with her daughter.
These waiting rooms we wait in are like being a voyeur in one-act plays of other women’s lives. And there but for the grace of God go I, indeed. I could have been that woman facing a second surgery so close on the heels of her first. I am truly blessed that I am not that girl, and I will keep that woman in my thoughts. It is my belief that she will fight, but it will be hard for her. But she has a family and a husband who obviously loves her to the moon and back, so I hope I see her again some day when the clouds have lifted.
As I watched and recognize the shell-shocked faces along with all the others , I am really glad to be thru that great unknown of the early days. And speaking of unknown, as I wait for my oncologist and gynecologist to pow-wow over me and Tamoxifen, I am struck once again how damn lucky I am thus far. Even my sweet man remarked upon it. I am not taking that for granted.
I get my first post everything mammogram next March, with an MRI to follow in May.
I will tell you what – Thanksgiving and Christmas and New Year’s will be very special to me this year.
Love you all.
St. Brigit’s Blessing
May Brigid Bless the House where in you dwell.
Bless every fireside every wall and door.
bless every heart that beats beneath its room.
Bless every hand that toils to bring it joy.
Bless every foot that walks its portals through.
May Brigid bless the house that shelters you.
Apparently I have a lot to grouse about today, and I hope my former editor and friend will not take umbrage at what I am about to say.
Some days, being a breast cancer survivor is not as easy emotionally as you think. Some days I even freak myself out with whackadoodle thoughts. I think this is pretty normal considering the life altering experience aspect of breast cancer.
My moments generally come late at night when I am really tired. I had one this weekend.
I had a wonderful weekend with my sweet man and friends, yet in the dark wee hours of Saturday night into Sunday morning that devil of a thought that haunts every survivor whether they choose to admit it or not popped into my brain.
What was the thought?
Quite simply “what if it comes back?”
He held me and dried my tears that followed (not a river, just a tiny trickle of a few) and said basically if it happens we’ll deal with it then together. And he said just ever so calm, loving and matter of fact, and you know what? I am damn lucky.
But I know what at least in me, in part, triggers these occasional thoughts. And it’s when I hear about all the women from all walks of life who have died from breast cancer. It’s a really bitter pill to swallow some days having been touched by this disease. I’m here, they aren’t, I could be them, and they me.
Most of the time I can relegate these thoughts away and focus on the positives and blessings in my life but there are some moments on occasion when those thoughts just creep into your head. And they are an insidious pain in the ass.
I have been told I have handled this whole thing pretty well since I first received my diagnosis on April 28th. But I have to be honest, I have worked hard, probably harder than I have worked on other things through out my life. The reality is when God and the universe give you a wake-up call, you pay attention.
But for as well as I have coped 98% of the time, there are many women out there who have not coped as well, or are not coping at all at present. When you receive news that you have breast cancer it makes your whole world just stop. And for some that devastating feeling, that fear? It lingers. So when I see things during this month of vomitorious pink overload that emphasizes those who have lost their battle to breast cancer, not to be disrespectful to any of their memories or to their families and friends left behind, but I want to say “hey now, look at us – we’re still here.”
And I had that feeling again today when I saw something in the West Chester PA Patch. It seems to be a new Patch-wide initiative to pay tribute to those who have lost their lives to breast cancer:
In Patch communities all over the country, we want to help you pay tribute to your lost loved ones by publishing their photographs on Patch.com. You are welcome to share your stories of these special people with others in our online community. You can even submit video tributes of your loved one.
Tell us your story or send your pictures
Patches all over are inviting people to submit photos of loved ones who they lost to breast cancer. I get what they are trying to do, and the comfort they are trying to bring, but hey, you know what? I am still here and plan to be here for a very long time. And as a survivor, it helps me in those moments that occasionally creep into my head for a little visit to be able to focus on survivors.
As survivors, we all know the reality: life is a blessing. So help us keep the positive attitude and remember how some of these initiatives make us feel as survivors.
One thing I would love Patch and other media outlets to do is to encourage not just a pink sisterhood that not all can identify with at times, but to encourage practical things like the Driving Miss Daisy List. If I had the money and could afford to, I would start a non-profit called the Driving Miss Daisy List – because I will never, ever forget not only the alone feeling of oneness that hits you when you first get your diagnosis but watching all the women in this country who go through their surgery and treatment alone. When I first started this path, I thought I could do a lot of this by myself no problem. And while I have put on the big girl pants and done a lot of stuff by myself, I know beyond a shadow of a doubt that there is a lot I could NOT have done without my friends and family.
Ok, back to your regularly scheduled programming.
I am officially dubbing it D’Oh Monday.
As a breast cancer survivor, and even from within a very minute of my diagnosis, I was forced to take stock in my life. And that includes the career. I work in a very stressful environment and don’t feel any reward from what I do. I feel like Sisyphus with the mother of all boulders.
After going through part of a massive corporate layoff as the economy started to tank in 2007, it took until the summer of 2008 to find what I currently have, and at the time I wasn’t being picky, I just wanted to work. So as a result, I took a job with no benefits, no sick days, no vacation days. I managed until my breast cancer diagnosis, but at that point I realized that the very structure of the job sometimes caused more stress some days then the job itself.
So here we are in what is really a depression and not a recession. But I have to be proactive. I realize no job is without stress, but I really do have to move forward.
Now of course, given the lumpectomy, I won’t be applying to the PA Renaissance Faire as a Wench of all Trades. Ok people, breathe, it’s a joke. Besides from a practical standpoint, I can’t fill out those costumes.
I have taken a look at some opportunities, and have applied for things of interest. Today I heard back from one place in particular. A non-profit that had advertised a terrific sounding opportunity on their website. I got back an e-mail that basically said “oh sorry, we filled that a while ago.”
Well do you think they could have taken down the ad from their own website? D’oh.
Maybe I should be easier on people about things like this, but face it there are millions of people like me out there beating the street to find jobs. And when you find those “a-ha” moments where you actually see something that meets some hope or dream inside of you and then they either do not respond, or they respond with something like that, it’s very frustrating.
It’s almost as frustrating as having to wait on hold for over half an hour without ever hearing a live person just to make an appointment at Penn Medicine at Radnor. They have a new phone system which is wreaking havoc on patients and their employees alike.
And yes, I saw an elephant stick out her tongue yesterday – that is my photo.
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