Live your life so that the fear of death can never enter your heart. When you arise in the morning, give thanks for the morning light. Give thanks for your life and strength. Give thanks for your food and for the joy of living. And if perchance you see no reason for giving thanks, rest assured the fault is in yourself.
~Chief Tecumseh, Shawnee Indian Chief
Greetings from the land of attempting normalcy.
Pardon the silence, I have been trying to re-enter the normal zone and stop stressing about the big oncology follow-up appointment later this week where I will dish Tamoxifen with the oncologist find out when the vampires take blood, when I can schedule a flu shot (I know it can’t be in my surgery side) and so one.
Maybe it’s just me, now, but I get anxious getting into the new parts of treatment. I want to be calm, but sometimes my mind just whirls. Wish I could be calm like the wise owl I photographed this weekend at a fair. Unfortunately I am not built that way, which is probably why sleep is a somewhat fleeting thing.
Also sending up a prayer and a hug to a friend from high school who lost her mom suddenly a few days ago. Life is a fragile thing indeed and some days are just better than others…..
Today I am working on those grateful, zen moments. Life is definitely much more grand with the damn lump out.
Taa taa for now!
Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace, and gratitude.
Breast cancer awareness month is upon us. As defined by Wikipedia:
Breast Cancer Awareness Month (BCAM) (also referred to in America as National Breast Cancer Awareness Month (NBCAM)) is an annual international health campaign organized by major breast cancer charities every October to increase awareness of the disease and to raise funds for research into its cause, prevention, diagnosis, treatment and cure. The campaign also offers information and support to those affected by breast cancer.
As well as providing a platform for breast cancer charities to raise awareness of their work and of the disease, BCAM is also a prime opportunity to remind women to be breast aware for earlier detection.
Ok now I am undoubtedly going to piss a bunch of people off. This month should indeed be about awareness, education, and empowerment, but it seems to have become so commercial. As I said in my article featured in The Main Line Times (and now picked up by The Delco Times and many thanks to that editor Phil Heron for his kindness), it’s not just about the pink rubber bracelets.
I am also tired of people who think Susan G. Komen is the only breast cancer charity out there. They aren’t. In my area alone, there are a bunch of really decent folks getting the word and help out there to breast cancer gals – BreastCancer.org , Living Beyond Breast Cancer, Save 2nd Base.
I am feeling bombarded by the media now as Breast Cancer Awareness Month is nigh, but as an age group this year I am feeling left out. I feel that they have the hyper-focus on the young who are diagnosed and treated and the much older. I am part of the Malcolm in the Middle set. I am in my mid forties, and where are the stories about women like me? I am not in my 20’s, and while I sooo feel for those women dealing with this at any age, I have a whole different set of emotions and life experiences too.
I am the woman in between stages in her life and I don’t feel represented. And I don’t feel I should have to don pink everything every day to do so.
I am one of those women who did not have an employer who offers benefits. I pay my own healthcare. I also did this without short-term disability, am a hole in FMLA. I do not have vacation or sick days. And I am a white-collar worker. In English that means I had to make up any time I took, which means I did not really take any time off. And I am resentful of a country that doesn’t realize there are millions like me out there. Politicians twaddle on about what they are going to do for people just like me….especially during election time.
Take Obama, for example. He is in Ohio today to twaddle about a jobs bill – like his late great healthcare babble it will be something else that won’t help average people like me. It’s just a political stunt like the fact he will do part of his schtick on a dangerous bridge that needs to be replaced – hate to break it to him but we have a bunch of those around here too. And as he revvs it up to try to say four more years, idiots like Sarah Palin also surface once again. She’s another one who won’t ever do a thing for someone like me. We need folks who will actually fix, not politicize both the healthcare and pharmaceutical industries.
Some are going to say I sound sour today. I am not. I am however a realist, and this is part of what I think about now – not just staying positive and keeping my cancer kicked to the curb, but also seeing how media portrays us gals taking care of the girls, healthcare issues, societal issues, and commercialism of the issue via all the stuff they try to sell us every October — this is why I appreciate Main Line Times Flair Editor Caroline O’Halloran for giving me the space to write about my experience – I am just one of the millions of women dealing with this. I am just an average woman experiencing it in face it – middle age. I am not a perfect size 2 who drives the perfect car and lives in the big house – I am just me. Damn proud of that fact, but also grateful to have a voice here (if it does any good, I really don’t know.)
I want to thank Good Housekeeping Magazine for a statistic they printed based on a British study in their October issue (page 49):
STAY THE COURSE: After treatment for early, estrogen-positive breast cancer, there’s a payoff for sticking with tamoxifen for a full five years, a British study has found. 17% fewer recurrences and 30% fewer cancers in the other breast over the next decade. Bonus benefits for women in their 50s: 35% fewer heart attacks and strokes
And ending with a shout out to a nice woman in Central PA named Marjie. She is a writer, blogger, and 26-year-old survivor….also planning her wedding through this process. She writes at Pink and Pearls and her story has been featured by Lifetime . her blog is awesome, so give it a read.
Winding up today is a reminder even to myself exactly how much of a process this is. But I am alive and was given a second chance at life in essence. And I thank god every day for that.
And I have a song on the brain today…Five for Fighting’s Chances Are
Why don’t insurance companies seem to really want to take care of the women who are taking care of the “girls”?
I have a friend who is a survivor who moved recently. She sent me a note the other day which in part said:
Apropos of the cancer issue, you will be interested to know that when I moved and had to apply for new insurance in my new state, two insurance companies turned me down for ANY coverage and the only one who would cover me excluded all forms of cancer for eternity. So from now on, I am on my own. Kind of makes you wonder what kind of values our society has that make audiences during debates shout “let him die” and that excludes all risks (at ANY premium price) from insurance pools in order to give millions to the company CEOs.
O.k., hello? My biggest fear with regard to health insurance: anything which would necessitate a change in insurance, or should I say insurers now that I have had breast cancer.
For some reason I thought the great Obama had taken care of at least this part of the health insurance debate in this country?
I also know someone (a woman) with colorectal cancer. She had been laid off prior to diagnosis and had no health insurance and is too young for medicare. She is paying out-of-pocket with I guess some grants and stuff. She will undoubtedly never get health insurance again.
Or look at me, I know I have a giant bill looming and I had to pay out-of-pocket for the radiation creams that are medically necessary, although my insurance company disagreed with my doctor.
Will we ever have fair and equitable health insurance where we actually get more bang for our buck? Even in countries with socialized medicine it’s not so hot – as indicated by something interesting out of Ireland (click here).
So Obama? You campaigned for this whole national healthcare thing and somewhere back in time cited a breast cancer victim as inspiration? Mr. President, we’re still waiting. And a note to that cuckoo clock running from Texas? Gov. Perry? He’s the one who doesn’t believe in evolution and if I was a woman in Texas I would move after reading THIS. I certainly won’t be voting for him if he is on the ballot for President.
But hell, when it comes down to it, who IS fit to run our country? I say maybe a bunch of breast cancer survivors. Then maybe we wouldn’t feel so like system victims/push me-pull-yous. Or like we are living in Torchwood.
And now a lovely little news report I found today about breast cancer and stress:
…and of course my car has to go into the mechanic. I woke up last night and the old boob was throbbing – I had rolled over on my left side so note to self: left breast is still on vacation, handle with care. The pain was pretty bad from doing that. (Must not squish)
In addition a very cool PhD named Victoria Tillotson who is also an awesome jewelry designer and is working on a website and book and more to help women with aesthetic issues during cancer treatment picked up my article and well…re-tweeted it to a gijillion people. (You can follow this part of her business on twitter at @SurvivBeautiful and the jewelry and other stuff @chicmetal)
This makes me feel good, really good about my writing. It also validates my choice to write about my breast cancer. Talking about it does help one cope. So you newly diagnosed? I am not saying you have to blog about it, but do talk about it. It helps keep the room from spinning. There are a lot of us out there — we get it.
In other new, got into a slight tangle with a friend today because I asked a question about a photographer they had used. I thought it was a fair question because I do like it when I get paid for my photos and I had taken a lot for them as a swap for exposure.
Unfortunately it set off a bit of a “thing”. So dear friend (and I know you read my blog), sometimes a question is just a question and a girl has to pay her breast cancer related expenses. And I have expenses to meet. That is all it’s about. No dig at you. Just a question because much like you did a while ago, I am transitioning more and more from the “donate services” column into the “get paid” column.
That’s all for me. Starting the day tired again, but I know that will get better….
For a former co-worker and a friend of Leron Magilner, the man police say was committing in cancer fraud, it was a surreal experience to find out the person they once called friend was lying to them.
“I find new stuff everyday. It’s incredible,” said Cortney McGowan about what she discovered about Magilner. McGowan was Magilner’s manager at the Wooden Indian Smoke shop and who was granted power of attorney for him.
McGowan, who had known Magilner for two years, said that he was helpful and friendly when he was working at the Havertown tobacco store on Eagle Road. But when Magilner recovered from testicular cancer, which according to McGowan was real, but claimed he was dying of pancreatic cancer, she became suspicious…..
Her instincts may have proved right, when the Haverford Township Police stated they discovered forged medical records that Magilner allegedly used to show people that he had cancer.
But the final straw for McGowan was when Magilner was taken to the Delaware County Memorial Hospital after a fall last month. Police and McGowan, who was at the hospital with the accused, said that Magilner allegedly refused any tests for his cancer.
“When I told the doctor that (Magilner) had stage 4 pancreatic cancer, he looked at me like I had seven heads,” McGowan said, adding that the doctor did not believe Magilner was a cancer patient.
McGowan also stated that Magilner allegedly kept telling the doctor the wrong medications he was allegedly on.
Once Magilner left the hospital and went home, McGowan said that she made him have his cancer doctor call her and confirm that Magilner had cancer.
“He called me up with a fake Chinese accent,” McGowan claimed, saying that Magilner pretended to be his cancer doctor. “I pretended to lose (phone) service so I wouldn’t freak him out. I didn’t want him to off himself.”
That is when she contacted police she said.
You know what? While this Leron Magilner was having benefits thrown for him to pay his rent, I was figuring out ways to work to pay my own damn rent and bills while people were worrying because I looked like death warmed over I was so exhausted. ( And that fatigue, P.S., still continues for me. )
What a way to take advantage of the goodness of others.
Look what he put on his Facebook page:
Apparently, now this guy is in jail.
Disgusting.
Oh and speaking of disgusting, Tom Capano, the former high flying Delaware lawyer who was convicted and sent to prison for the murder of Anne Marie Fahey, the 28-year-old scheduling secretary for then-Delaware Gov. Thomas R. Carper in 1996 died in prison today. I remember seeing the “Missing” billboards along 202 in Delaware when Fahey’s family was searching for her.
I am just full of the cheery today, ain’t I? Sorry. It’s just the news du jour. Current events and all that.
I will have a brief break before the march of the co-pays starts again. Poor oncologist is so nice. But I am still having reservations about Tamoxifen. But then again, the alternative is distinctly unpleasant.
Tomorrow I am a week out of radiation. I am still getting the waves of tired for lack of a better description, but my skin is starting to heal.
Wow, a normal Saturday. Well relatively speaking since my left breast continues to take on a life of its own. It is still a very red donut peach, and it still hurts, but a little less each day. I won’t miss the hyper-sensitivity caused by surgery and radiation. I hate note being able to sleep on whichever side I choose among other things. And oh boy do I miss normal bras.
I love just being able to sit and enjoy a cup of French Press and watch HGTV, although I wish A&E would resurrect “America’s Castles” – I loved that show.
Thus far it seems my breast cancer piece is being well-received. To write about it is all part of the process of living with this I think, but I am sure some are having a lot to say about it. My ex if he bothers to read it will be one of them. He always referred to my writing as self-aggrandizing. I disagree. It is part of who I am. And it’s something I love to do: write. Another thing is take pictures – some had a lot to say about that too when I first started doing it. But again, it’s something I love and something I am pretty good at. And one thing this experience of breast cancer has taught me is life is too short to not do what you love in addition to trying new things.
But the thing most of you who know me solely from this blog don’t know about me is that a lot of my other writing has had a decidedly activist edge to it. It is not all that I have ever written about, but community activism is part of who I am.
Since my diagnosis I have done very little in that area known as community activism. And I am good with that. I have my voice, I know how to use it, but others need to take up that mantle too. But we’ll see who of those who see me as a one-dimensional person will have things to say about my personal choice to be open about breast cancer and to write about it.
In my area there are a lot of women with a lot to say about how other women should live their lives. My friends and I refer to them collectively as adult mean girls – because that is what and who they are. A lot of them are just miserable. One of my favorite examples of the parochial nature of them is when they say that women like me who have never had children have no right to criticize the school district. And then there are the women who are literally cheerleaders for politicians on the most local of levels. Hell, sometimes they were the policitians. Heaven forbid you not agree with them. Suffice it to say, their behavior in this quarter is definitely giggle worthy.
On some editorials I wrote in the past for the local paper, the comments these “adults” would leave were just simply marvellous. They loved leaving anonymous comments like a newspaper website was a virtual bathroom wall. (Mind you if their children did things like that or had that done to them they would have had a very ironic ” it’s not nice to bully conversation.”)
Seriously, there they were, mostly adult women (also some men on occasion who often acted more like girls than the women) right back at the high school lunch table sniping and whispering. I never have understood it because basically my “crime” was simply not agreeing with what they thought they could decree was going to be. Their problem is if you don’t agree with the masses and can’t fit into the cookie cutter image of what they feel women should be, they can’t deal. If they can’t control you, they can’t deal. And these crews weren’t even those who think they are the new society dames. That crew reminds me of that line in the movie “Working Girl” when Alec Baldwin says to Melanie Griffith “Who the f–k died and made you Grace Kelly?” (and at the end of the day, a lot of those dames still don’t know which fork to use.)
My forties are a decidely liberating process – as a teenager these folks may or may not have bothered me (probably not or not for long), but as a grown-up, I am glad I am an individual. Who wants to be a clone? And that includes my being pretty much o.k. with my 1 6/8 breasts status. Some days I look in the mirror and it’s not fun to see, but it’s what I have to deal with and it could be a lot worse. At the end of the day, I often feel quite sorry for these women and men. They seem completely oblivious to the many blessings in their own lives. They exist, stuck in their own heads, limited by their own thought processes.
Breast cancer has also taught me, like many women before me that it is indeed just fine and dandy to have days where you just say “F it”. We’re not perfect as human beings, and life is too damn short to not be able to express yourself and say how you feel.
Who would have thought breast cancer was in a sense, liberating, but indeed it is.
Breast cancer gives you as a woman a whole new appreciation for the phrase “carpe diem”.
Yes….really public. I feel like I am out there in my underwear LOL, even if it is hardly the first time I have spoken about this publicly. (Well, hmmm, I guess I am out there in a hospital gown.)
Thanks to Pete Bannan and Caroline O’Halloran of Main Line Media News for taking part of this journey with me. Here is the link to the video (pumpkin head that I am)
To say that 2011 has been a year of great change for me is a bit of an understatement. As I write this article, I have just finished the last of seven straight weeks of daily radiation therapy for breast cancer.
A note to new readers who may judge my decision to be public about breast cancer – every woman approaches their cancer differently. It is not anyone’s place to judge on how a breast cancer patient or breast cancer survivor choses their path.
This has been the greatest challenge of my adult life. I have learned a lot about myself and others through this process. I hope in my own way I can pay it forward and help other women starting on this journey.
To my doctors, thank you. I know our journey together will be an ongoing one, but thank you for your care and attention these past few months.
To my friends, family, and sweet man – I love you all very much. You guys got me through.
Ok, I am getting a little schmoopy now, so I am signing off.
…today is about how proud I am of my pal Thomas and Gladwyne Cub Scout Pack 110! They were part of Bryn Mawr Fire Company’s 9/11 tribute.
Thomas’s mom is one of the Driving Miss Daisy league members who got me through radiation. Barbara is awesome and I love her and her family very much and I am SO proud of Thomas!
Yay!
My status is the same: incredibly tired and sick of the skin crap. Resting is hard, even when I keep falling asleep. I am so unused to doing nothing. But I know I have to do this for my own health. Tomorrow I call the oncologist. Today I just veg.
People, I have got nothing. I am tired. I am going to try to recharge my batteries for a couple of days and then back to the oncologist for the Tamoxifen chat.
I can’t believe I won’t be seeing the inside of the hospital this morning.
My mind is sort of an empty buzz today – can’t articulate it better than that. I have so many things to do and just don’t have the umpfhh to get up and go. I have to take time to zone and snooze.
I think my mother seeing me at radiation yesterday even for the last one was really hard on her. Maybe I should have not had her there, but she wanted to be there. I don’t know what is right and wrong.
Yesterday as I plopped up on Facebook I was finished radiation, a friend of mine plopped up on Facebook she was engaged – endings and beginnings, beginnings and endings.
What a trip it’s been since the diagnosis, huh? And the journey is just beginning. (What you thought you would be rid of me? I have five years of Tamoxifen to complain about.)
The ladies of the Driving Miss Daisy List hope that we will start a buddy support revolution for breast cancer, and also wondered about starting something where women just made arrangements with hospitals to just have women there in the radiation and chemo lounge waiting rooms to just be with people. And I am not talking about the clowns, either. No offense, because those ladies are nice, but I did not like clowns as a kid and while I never minded a chat, a clown and loud colors and forced hap-hap-happy is not what some patients going through treatment can handle. Some times all you want is a hug.
Anyway, more to think about.
Right now I need to chill. Then I can worry about the rest of my life….
I rang the bell. And yes, it stayed on the wall. Seven weeks are now complete.
A slew of my Driving Miss Daisy list showed up to watch me ring the bell that says “Titanic”, along with my mother and a dear male friend who decided to brave the gal gauntlet .
We were chided by a hospital administrator for being too loud. (I had to resist the urge to tell him we were all a long time dead.)
As we waited for me to go in for my last treatment (it was an unusually slow morning), I looked around at the familiar faces who are part of my life all of the time and the familiar faces I had grown to know during my seven weeks of treatment. It was overwhelming emotionally and there aren’t too many moments in your life where you feel so much at once, but today, I felt that crazy mix of emotions which just wash over you like a wave at the beach.
But it wasn’t a sad wave. It was mostly happy, a lot of relief, and a little bittersweet. I did my actual crying in the radiation room when I was finished because I truly can’t explain how awesome the team of technicians and nurses who were with me every step of the way at Lankenau were.
The waiting room will now be much quieter…..
Pardon me, while I take a nap. I still hurt and more of my skin has done some icky things.
On an unrelated note, my friend Tina sent me the most awesome new bay leaf plant. One of my favorite plants on an important day.
Why don’t insurance companies seem to really want to take care of the women who are taking care of the “girls”?
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