surviving

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.

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D’Oh Monday

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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will ann curry be interviewing me too?

The Today Show  had an E! entertainment reporter and reality TV show star on early this morning- Giuliana Rancic.  And as I write this all the celebrity news  and other news sites are rushing to share the news she shared this morning on national television – as she was getting ready for IVF to try to conceive they had her get a mammogram, and she popped positive for a breast cancer diagnosis.

I am not a big   reality TV show watcher (and there seem to be reality TV shows for reality TV shows), so I don’t know much about this Giuliana’s show, but I have seen her on E! News and fashion police with Joan Rivers.  It takes guts for women to go public on breast cancer and I felt sorry for her this morning.  You could see the woman was vibrating.

But I have to ask as an everyday woman who has already gone through the diagnosis, the surgery, the radiation treatments….will Ann Curry be interviewing me too?

I am not knocking this Giuliana’s decision to be public, but I do have to ask if she wasn’t a celebrity figure, would the Today Show have been interested in her story?  

Here I am one of the millions of every day women who have gone through this.  And trust me, the majority of us are doing it on a heck of bit more of a budget then a celebrity.  Some of the women going through it are probably doing it without health insurance or are self-pay on their health insurance like me. 

In other news, I got a form from my health insurance company which annoyed the crap out of me – basically asking if I have other health insurance, or am getting disability or social security…and am I still working.   I mean seriously? What do they think? That I am off decorating the country estate and eating bon-bons?   No health insurance company, you are it.

Additionally, I still feel like I am a revolving door of co-payments and doctor appointments and am waiting to hear from my oncologist on my actual start date of Tamoxifen.

This weekend I had the late at night thought of “what if it comes back?”  Fortunately for me, when I had that thought, my sweet man was right there.  “If that happens, we will deal with it then” he replied. 

(I don’t think realistically once breast cancer has touched you that you can escape those occasional thoughts rattling through your brain.)

I was assailed with boobs this weekend, though.  We went to the PA Renaissance Faire.  I am having a hard enough time getting back into a normal bra, and these women were doing the full corset.  I wondered how many had gotten recent Ye Olde Mammograms….

One other breast cancer thing – check out writer Diane Mapes – she is a successful freelance writer who is writing about her breast cancer among other things on her blog Single Shot Seattle.  Her post from October 15 resonated with me – it’s titled  Writing about breast cancer is scary, too – I think everyone should read it.  Here’s a peek at the post:

So it’s been an interesting couple of days. My essay, Mastectomy and the Single Girl, went live yesterday on Today/MSNBC.com, garnering a lot of online comments. I’m happy to say most of them were supportive, although there were a few people who thought I was “crude and vulgar” or being too flip with regard to a horrible, devastating disease (uh duh — I have it) or that I was suffering not only from ILC (invasive lobular carcinoma) but a really bad case of TMI.

Different strokes for different folks, I guess.

Quite frankly, I still haven’t decided if I’m insane or stupid or brave or full of myself or what when it comes to sharing my story.

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meet jenny brown

This is my blog, so I can say what I want.   I have a friend running for County Commissioner in Montgomery County, PA.  If you live near me, I would love  you  all to get to know the real person – not just the one now appearing in the Flat Hal mailed attack ads from her opponent.

This video above was made  in part before the decision was made for her to be a candidate.  It is an introduction to her if you are not familiar with her.

She is running against someone I first became aware of when he was a staffer for then Congressman Joe Hoeffel.  His name is Josh Shapiro.  I wasn’t impressed then, and he subsequently went onto the state house in Harrisburg, PA .  I am still not impressed.  Now he wants to run for county commissioner like his old boss Joe Hoeffel (who became a county commissioner after being a congressman and for a while always seemed to be running for something.)  Shapiro’s running mate is a lady named Leslie Richards.  I know nothing about her other than the company she keeps.

When I got diagnosed with breast cancer, I told my friends one by one.  Among those friends I told were Jenny and her husband Rick.  Both have extremely busy lives, and they always took time for me, quietly checking in to see how I was doing.  

 Jenny was also one of the women from the Driving Miss Daisy list.  She gave up her time for me to drive me to radiation.  She did it quietly and for no other reason then she is my friend.  She has been so amazingly loving and positive and supportive.

That is the type of woman she is.    And the type of woman she is in her personal life plays over into her political and professional life.  There are too many people out there who are disingenuous in life.  Not Jenny.    I am proud to have her as a friend and I think she will be amazing as a county commissioner if elected.

I am not telling you how to vote, or who to vote for.  I am asking you to get to know an amazing woman.  Get to know her.  That’s all.   

 

 

 

 

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this made me cry.

This is an editorial from October 2010.  I stumbled upon it after finishing another editorial about Living Beyond Breast Cancer.  It is written by a woman named Hannah Campbell – her husband has male breast cancer.  This is a beautiful and touching tribute and I cried after reading it.  It’s a year old so I hope Hannah and her husband Mike are doing fine.  The article says they live in Havertown.

Read it.  This one is for the guys.  Male breast cancer does happen.  This is honestly and beautifully written and it made me cry because it was so open.

And Hannah, I don’t want to take Tamoxifen either. But I know I have to…and thus far all my doctors are in agreement.  And I am scared to take Tamoxifen.  I have a history of gynecological issues  like fibroids and ovarian cysts and all that good stuff.  But the alternative to NOT taking it scares me more – I love life. And damn if you don’t think about that a lot after getting a cancer diagnosis or loving someone who has.  Hannah I hope you and Mike are doing well.  I don’t know you, but thank you for your editorial.   It’s beautiful.

October’s pink ribbons are for women – and men

Published: Wednesday, October 20, 2010 By Hannah Campbell/Main Line Times

He’s a 6-foot-3, 280-lb. Teamster truck driver… the last person I’d imagine would get breast cancer. But that is exactly what happened in February 2009 when a core-sample biopsy showed a malignancy in my husband Mike’s chest.

For nearly four years Mike asked his physician about the lump above his breast. For four years the doctor assured Mike that it was “scar tissue.” Something didn’t feel right about it, so Mike finally requested that an ultrasound and biopsy be done. He later calmly e-mailed me that the results showed a 3.5-cm malignant tumor in his left breast, which had also spread to some lymph nodes. I raced from my desk at work to the ladies’ room where I cried so hard I couldn’t catch my breath. Our four children were also in shock over their dad’s cavalier e-mail.

For years I’d seen pink ribbons for breast-cancer awareness and I sympathized with those women who suffered from this dreaded disease, including my Aunt Kate, who had a double mastectomy in the 1970s. I don’t recall her having chemo or radiation or losing her hair back then; she seemed to do well afterwards and kept a stiff upper lip about it. On my part I faithfully had a mammogram done each year while I worried about the post-hysterectomy estrogen pills I took for 20 years. I never, ever thought men could get breast cancer…..Mike’s operation went well; the surgeon assured me that he got all of the cancer, including the affected lymph nodes. I asked a nurse, “What does cancer look like?” And she told me it looks like spongy mushrooms. For me, viewing Mike’s scar was traumatic… the full mastectomy’s incision ran midchest to under his armpit. Mike kidded that his incision looked like a shark bite.

Four rounds of chemo were to follow, and I cared for him thanks to the Family Medical Leave Act. Our sons shaved his head and called him “Daddy Warbucks,” “Kojak” and “Mr. Clean.” I on the other hand was stunned at his appearance for I remembered the beautiful curly thick head of hair of his that hung on him for the 38 years that I’d known him. His now bald head was the visible proof that cancer and chemo indeed coursed through his body….The toll Mike’s cancer has taken can’t be measured: he has gone through pain, suffering, worry and discomfort. He returned to work driving a truck after a long recuperative period: eight months. Our finances went into the toilet due to lack of 32 paychecks and yet I feel guilty for even mentioning that. Still, trying to pay bills and catch up also takes a toll and creditors don’t notice or care when one is ill.

Naturally we are grateful to God because this could have been devastating, as it is for others. There are far too many death notices stating breast cancer as the cause that snuffed out a vital life; I cringe when I read them. Could Mike’s cancer return? When? There is no guarantee with the insidious devil of cancer. Mike now takes chemo in pill form and his daily dose of Tamoxifen for the next five years is a preventative measure. He hates taking it, he hates the aches and pains, which could be a side effect or just signs of aging at 60. He debates dropping the pill and considers the risk of cancer returning versus not feeling well for the next five years. His oncologist insists; his primary-care doctor says he can stop taking it. The same guy who didn’t diagnose the lump for four years now has no credibility with me.

For all the men reading this, please know that male breast cancer exists. See your doctor and get a second opinion if need be. The pink ribbons we see represent breast-cancer awareness… for all of us.

 

 

 

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one month

One month ago today I finished radiation.  On November 1st, it will be what? Five months since we did out, out damn lump?

How time flies.

And once my doctors finish conferring (and who knows how the Blackberry outages are affecting them), it’s T4T – time for Tamoxifen.

Life and time march on. 

I can’t wait until I hit five years!  (and so on)

I stumbled upon the videos posted today.  I don’t usually post what I generally find to be the schmaltzy pink crap, but I am feeling a little sentimental today.  

One month.

 

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pleasantly surprised

Good morning all.  I woke up in a very strange mood…Some mornings I awake with this whole “whoaaaa” of all I have been through in the past few months.  And here I still stand, some days a little bent, but not broken.

I have been irritated by all the whole think pink overload of October as you know.  As a new breast cancer survivor it is not only overwhelming some days, but being who I am, I hate the hokey aspect of pink plastic crap.   I did have a good giggle last night when a couple of friends said the pink Wheat Thins boxes look like boxes of tampons.

I decided WTF and picked the Lifetime production “Five” off the On-Demand menu on TV.  I am going to tell you I was pleasantly surprised.  It was  also surprisingly realistic.  It is five short films woven around one common character and that is all I am going to tell you.  But it hits on many of the notes of emotion you can experience as a woman diagnosed with breast cancer.  Watch it. Yes, it’s a made for T.V. movie, but I liked it.

So here I am a survivor and it’s in my hands how good my life is going forward.   Not only staying healthy, but learning to manage stress better.  Yes, in this economy I am really fortunate to have a job, but I have been where I have been a few years, and although I have never been a job hopper, I know this job is all wrong for me because it creates a lot of layers of stress bordering on abusive not found in other industries.   I want to be somewhere which values me and my skill sets, and around people who enjoy what they are doing.  Maybe that sounds crazy, but I know it has to happen.  I also want to work somewhere that has more normalcy (whether a large, small, or medium-sized company) to it with the office structure – and actually has things like vacation and sick days I can earn and accrue,  and not worry about having to make up every minute taken because there are no vacation and sick days.  (Let me tell you, having to worry about that all the time adds to stress.)

Some people think I am crazy for putting these things out on a blog, but I think it is important to talk about.   Women and stress in the workplace is very, very real. We act like superwomen some days, but the reality is we are only human.

I am fortunate to have an amazing support system, and I know God never gives you more than you can handle even if it feels that way some days.  No, I could not do this without my family, sweet man who is my family too, and friends.

That’s it for me.

 Let us be grateful to people who make us happy;
they are the charming gardeners
who make our souls blossom.

~Marcel Proust

 

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milestones

Today in a sense  I said good-bye to my radiation oncologist Marisa Weiss .  Today was our last scheduled appointment as part of my breast cancer treatment.  I am a little verklempt after the fact.  She will always be but a phone call away, but today was my last day as a regular patient.

And yes, Driving Miss Daisy List, I went alone.  I needed to.

Dr. Weiss is an amazing woman and she made the radiation something I could get through, even if it was ungodly long and she tried to get me to eat kale for breakfast (I can however eat spinach for breakfast and asparagus LOL).  Seriously, she is an amazing force in the world of breast cancer treatment and education.  I wish more women would start paying attention to her breast health initiative Think Pink/Live Green  .

Dr. Weiss thanked me for my breast cancer article and interview I gave.  That totally blew me away —-as busy as she is, she read both.  She told me I brought comfort and inspiration to many women.  This is of course incredibly flattering, but me? Wow. Really? I still don’t know about that – I am just me.   We spoke about my decision to be public about this while still remaining private.   Some days it is a balancing act, especially when people come up to me and say they are sorry.  I know I should be more tolerant but it is like nails on a chalkboard because no one caused it, it was my roll of the dice, luck of the draw and I am grateful to be alive and kicking so can we focus on that? The positives?

She was happy with the way my skin has healed.  I think the shooting pains that occur on occasion through the site that got dissected and baked is beyond her control.  The tired I keep hearing will fade over time as my immune system recovers and honestly, I can’t wait.  The F in fatigue just blows.  All in all, considering the abuse it took to make me cancer free, my breast doesn’t look half bad, even if I am not thrilled about the perpetual state of lopsidedness.

They are also happy with the state of my weight, as in decreasing and all that.  We spoke of other things including the ungodly stress of my current job.   But I don’t need a doctor to tell me that finding something different where my talents and skill sets are actually appreciated  and I was happy working would be less stressful and more beneficial.   But this economy makes nothing easy, does it?

And speaking of economy, what are all the companies making (as in profits)  in our pink overload month of October 2011?  I am assailed by PINK even in the grocery store.  Even  damn Wheat Thins are pink.  What are these companies making versus what they are donating and where are they donating?  Are they spreading the love?

Ok that’s it for me.  Another milestone reached in treatment.  But I love these people who are part of Dr. Weiss’s team at Lankenau Hospital.  I hope god is good and I never have to deal with the spectre of radiation or even chemo for the rest of my life, but I would like to stay in touch with these people.  They are just that terrific.  I left a bunch of magazines in the radiation waiting room for the women currently going through treatment.

And seriously?  I would like to make my Driving Miss Daisy List that got me through the days a national movement.  Think we could all get that done together?  Seems to make more sense then pink Wheat Thins.

Next up Tamoxifen.  Sent my medical oncologist a little nag today about that.  I need to get started if I am doing it.  And how about the study out today on selenium and vitamin E? That “select trial”?  How about vitamin E causing a 17% up-tick in prostate cancer?

O.k. time to draw this flowing stream of consciousness to a close.  Today I actually feel like a survivor.

No pink plastic or rubber trees were harmed in the writing of this blog post.

 

 

 

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grrrrr….

I really wanted to go to the BreastCancer.org Rock the Ribbon Benefit because Shawn Colvin is one of my favorite performers.

But we waited too long and now those level of benefit tickets are sold out.   So I am not going now.  I have absolutely no desire to watch other people’s faces as they come out after hearing Shawn Colvin.   I am really disappointed.

And oh yes, my boss came to work sick and I have swollen glands again.

Tuesday is just peachy so far.

Go back to radiation oncologist today for a check up. 

And have you noticed every day in October brings more pink crap? 

Did anyone watch the much hyped breast cancer movie thing on Lifetime last night?  I did not.  I decided I could not watch any more actresses playing breast cancer patients.  I hear this is common once you’ve lived it.

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children of the corn

Yesterday I decided to rejoin the land of the living. I am still tired – which is unbelievable to me.  I am still congested and still have no voice (some consider that a blessing LOL) but we went to a local farm for pumpkins, apples, and a corn maze.  I did need some sun to recharge that vitamin D or whatever.

Anyway as we went to this amazing farm on 926 in Westtown, PA.  Chester County is loaded with these farms that open themselves up to us in the fall, but we chose Stratton’s Wynnorr Farm .   It is a beautiful piece of property and I think one of its hills offers one of the highest viewpoints in Chester County, PA. And it wasn’t commercial corn maze and pumpkins – it’s a real, old, working family farm.  The fun was simple and old fashioned.

The sun on my face felt good and I got to pick pumpkins with the kids.  What could be better?   I was with my sweet man and one of my best and oldest friends.  It was good to feel completely normal .  To not worry about my breast cancer, bills,  a job I dread every single day, and all the other things that are the unfortunate stresses of adulthood.

We were riding around on a smaller tractor with a cart run by one of the family members who lives on the farm.  We discovered her by accident because she had this amazing collie. She gave us the history of the farm and was just the kind of woman who you want to make friends with – very cool. 

Anyway as our smaller ride pulled over and waited for the large hay cart full of farm visitors to pass, I looked up and then I saw her.  I did not speak to her, did know her, but I recognized her for who she was: a breast cancer survivor.   Like me, her face was turned upwards toward the sun and she was smiling and at peace.  Her hair was short, the short of having had chemo, but she looked so happy and that made my heart glad.  It was an amazing little moment that probably no one but myself much noticed.

Enjoy the sunlight. Cherish the little moments in life and the magic of ordinary days.

 

 

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