#pinktober truths

Ahh #Pinktober. Ask most women who have had the disease, and who are still in treatment for the disease how they feel about a month-long barrage of cheap pink marketing ploys and they will tell you they dislike the farce.

I am a very lucky six year survivor. But my nouveau reality is not pink and fluffy.

First of all, it’s the fact that breast cancer is expensive. It doesn’t matter how good you think your insurance is, get a cancer diagnosis and get on the hamster wheel of endless or endless feeling medical bills.  After a while you begin to wonder if anyone covers anything and what have you been paying for every month you pay your health insurance premiums?

Secondly, breast cancer is a time eater.  It is a crazy time consuming time sucker.  Doctors’ appointments, treatment, physical therapy if you need it for say lymphedema, etc.  You begin to want to neglect other appointments like the dentist, etc because you feel like life is one big doctor’s appointment.

But you persist, because the alternative involves not being on earth any longer and giving up. Giving up is not an option for me.  But today I am tired, and I am going to lay out some of what else I feel.

I am actually so tired a lot of the time.  This crap some days still sucks the life out of me.  I am cancer free but six years into a ten year script of Tamoxifen.  Radiation gave me osteopenia.  As per WebMD:

Osteopenia refers to bone density that is lower than normal peak density but not low enough to be classified as osteoporosis. Bone density is a measurement of how dense and strong the bones are. If your bone density is low compared to normal peak density, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop bone density that is very low compared to normal, known as osteoporosis.

What does this have to do with Tamoxifen? Well because of the side effects  of aromatase inhibitors meaning a potentially greater risk of things like actual osteoporosis, they kept me on Tamoxifen once I was in menopause (first chemically induced, then insured forever by a full hysterectomy a couple of years after breast cancer surgery.)

Tamoxifen has been the lesser of drug evils but not without issues.  I used to sleep.  Now it is a struggle.  Irritability and mood swings.  Inability to concentrate and you do not retain as much as you used to – menopause brain with Tamoxifen ribbons. And flirtation with baseless depression some days.  I say baseless because I know nothing is wrong, but it is like I can feel this fog creeping over me.  And I have to work to shake it off.  Being positive has never come completely naturally for me.  I have learned through just being grateful to be alive to be more positive.  But some days are just a struggle.

And weight gain.  Tamoxifen gives me what can only be described as what women who experience pregnancy hunger cravings.  Between first the progestin they put me on BEFORE my diagnosis after 35 to control the ovarian cysts, fibroids, and horrible ungodly periods and Tamoxifen until a few months ago, all I did was gain weight. Along with the weight gain is a messed up digestive tract.  I actually think radiation is the culprit there.

I was never a fat person growing up.  I always had appearance issues and was never pencil thin, however. It wasn’t in the genes for me.   What was in the genes however, were some of my mother’s obsessions. I love my mother but I grew up in the shadow of an image and weight obsessed mother.  A few years ago I started to actually fight back against it because every damn conversation at some point turned to either women (a) who let themselves go or were (b) fat according to her.

Breast Cancer hits the female psyche in so many ways, but probably none more so than causing poor self body image.  I have been no exception and it has been hard, so hard.

First there is the big old part of my left breast which was removed due to disease and the stage two tumor that was too damn close to becoming a stage three tumor.  I have made my ultimate peace with that as I am not a candidate for flotation devices, err fake boobs. But some days I am quietly in tears in the mirror.  I am so damn lopsided.  I am alive but feel like I have Quasimodo breasts some days.  And pre-cancer, I had enviable natural breasts.  The kind women pay lots of money for.

But I am alive. That is what I have to remind my ego of the I am not 25 years old anymore person.  But it’s such a pain in the ass.  Bras hurt because left side tissue is so gone and continues to settle.  But I can’t go bra-less or I look like a  woman from the hills of poverty.

The weight gain has been very hard.  It is slowly starting to reverse because of the physical therapy I had to start post knee surgery.  I am still doing physical therapy.  And I am working my ass off literally and slowly.  I realized partway into therapy it was one of the first things I had really done for myself to change the status quo in years.   I was so tired after surgery and treatment that I just stopped everything.  It was easier to just be tired.  But now I know I can’t allow that tired to take me over.

I am blessed because just as I have had the most amazing cancer care team, my knee surgeon knew just who to send me to for physical therapy.  My therapist doesn’t just let us sit there and mark time. He motivates us, pushes us, tease us, cheers us on.  He has gotten me moving.  Slowly the weight is coming off.

And I am so damn proud of myself some days.  Yet…some days the evil twisted whispers of poor self body image creep in.  The funniest thing that hardly anyone says anything.  Sometimes but not often.   Truthfully now is the time I could use an atta girl or two. But I guess I wil have to give them to myself.

So when us lovely survivors see the glitzy and glossy marketing campaigns during “Pinktober” we aren’t rah-rah about it.  We’ve lived it.  Cancer is not pretty. It’s not pink or fluffy.  It’s not a pink cardboard box of cookies, or a crappy pink rubber bracelet.

And we have zero respect for the companies that capitalize on a disease that may have killed us given half a chance, and which has claimed many we have known and loved. Pinktober with the endless cancer commercials makes me vibrate to the point of panic some days because all I hear is cancer, cancer,  cancer. 

I am lucky to be here to be able to write this.  I know that.  And I have some friends who live with Metastatic Breast Cancer.  They are my personal heroes.   We as survivors and patients come in all shapes and sizes, most of which really aren’t trendy and Hollywood.  It’s real and it can be raw.  Be supportive, but please understand when I say some days you have no idea how this feels.

I realize this post is a lot to take in.  I used to love October, but now part of me dreads it.  I wish people would rock more fall colors and less pink garabage.

Is it November yet?

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sometimes the #pinkprofiteers make you shake your head and wonder

As seen in Hope’s Cookies this week. Pray tell, how do their cookies raise awareness exactly?

Here’s what some people said to a friend of mine who was equally irritated by blatant #pinkprofiteering:

  1. One for each? ‘Cause nothing says breast cancer like cookies with pink sprinkles ☹️
  2. I’d respect things like this more if proceeds were donated to oncology research than “awareness”

Yep kind of my thoughts too as a 6 year survivor.

It’s kind of offensive the way people try to capitalize, yes capitalize on BREAST CANCER.

So I hit the business up on Twitter:

This is what I got back from them via whomever does their social media:

Mind you I did ask them why they did not donate 100% of their pink proceeds before they came back with who they are supposedly donating to:

In my opinion nothing says #pinkprofiteering like Susan G Komen with all of their glitzy overhead. And if they were doing that why not post right there where the cookies are about where they are donating?

#Pinktober in my humble opinion does not necessarily bring out the most flattering sides in businesses.

Hope’s Cookies saddens me. I thought they were smarter than this. They lost me going forward as a customer. To them that will not even ever be noticeable as I was an infrequent customer at best.

Please, if you want to raise awareness don’t have the stupidity to tell an actual survivor that your sprinkles raise awareness. It is utter twaddle.

Is it November yet?

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keep calm….and ignore pinktober (pass it on)

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dear penn medicine, enough already asking for money in 2017

This is what makes me dislike non-profits. There is only so much giving one can do in a calendar year, and well Penn Medicine? I give enough right now. I was so excited to have FINALLY paid off my oncology/radiation bills which were quite expensive and took a few years. That was not through Penn, that was through Lankenau because at the time Penn did not have a location for radiation close enough to where I was working, and well, I worked through breast cancer treatment.  They also did not have the radiation oncologist I wanted.

But seriously, there I am doing my happy dance because I finally paid off radiation – every single penny they said I owed….and…wait for it…along comes a series of bills related to 2017 procedures and a surgery that equal a few thousand more  in hospital and hospital related bills.  I think I did cry when I got them out of sheer frustration. In addition to these bills, I have has SO many co-pays in 2017, including $70 for every physical therapy session, multiple times a week for months – which I paid because I need the therapy. And my knee surgery anesthesia was also an additional bill because the anesthesia is a practice within Chester County Hospital where I had my surgery and not under the hospital umbrella, so that bill counted like an out of network thing.

At almost the same time I am getting these bills I get a letter asking for an additional donation on top of the non-profit events I support annually.

I took to twitter and told Penn Medicine how I felt:

This cause a flurry of communication from Penn Medicine promising to do better. Apparently that promise meant additional solicitations?

So I sent my new e-mail buddy a response to his e-mail this morning:

Subject: Re: You can advance medical breakthroughs that benefit all of us!
Date: 9/17/2017 11:43:19 A.M. Eastern Daylight Time

Dear Thomas,

 

Oh I got your letter all right and I put it on Twitter because it was kind of offensive to receive a request for a donation practically the same day I found out I had over $4000 in residual hospital bills from a recent surgery and procedures.

 

Always a hand out means I stop supporting and so do many others.

 

And the fact that I have a few thousand dollars outstanding in bills I owe the hospital for which I am obligated unless of course I wish to send tax returns and pay stubs and other dehumanizing things to be quantified as a “charity case”.

 

I think in 2017 I have contributed quite enough to the hospital’s bottom line.

 

Furthermore, I support events like the annual wine festival to crush cancer at the Dilworthtown Inn, and Chester County Day.

 

In addition to supporting those events I also write about them free of charge on my website http://www.Chestercountyramblings.com – that’s free advertising for Penn’s events. I don’t get any kind of donation in kind letter for that, and as you know the cost of advertising and marketing, that’s quite a nice donation in addition for which I don’t get credit.

 

Until this year my personal email address was only in the system for the nonprofit events that I support that I mentioned, and so I could communicate with my care team via my Penn medicine.

 

In summation, I have paid a lot of hospital bills the past few years and a lot of doctors bills the past few years – and Penn doesn’t have to chase me to get its money. I think a thank you is in order… not a damn request for more money!

 

Thank you.

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bumps in the road

Life likes to throw us curve balls. It’s fate’s way of making sure we are paying attention.

I am a cancer survivor. Which means sometimes things cancer make me feel emotions in technicolor.

Recently, one of my childhood friends lost her mother. I spent the day with both of them the week before her mom passed…. from cancer. I sat with her mom that afternoon for a while by myself as her mom dozed and my friend walked her dog. Her mom murmured here and there in her sleep, and at one point woke, looked at me, smiled and patted my hand, and went back to dozing.

I was glad I had that one final afternoon with both of them.

Yesterday I sat with her at her mom’s house as we went through photos for the memorial service.

It was hard to do, yet it was a beautiful thing. My friend’s mother had all these photos of her family. A lot of people don’t save those photos. It was so cool for my friend to see her history. And we had serious giggles at some dour old Victorian Scotswoman who was one of the unnamed relatives. It’s like she was disapproving of us from the photograph.

My friend’s mother was lovely. Quite the beauty when she was young. We saw her grow up in black and white snapshots, and her parents too. We saw her with her ponies and then horses. Her favorite cat. Her wedding announcement from the front page of the then Sunday Style section of the Philadelphia Inquirer and the New York Times.

As this is all unfolding, another friend from back in the day is dealing with her own news. I hate it when lymph nodes light up like a light on a Christmas tree.

I have something to tell you she said. I was not expecting that news. The news of surgery followed by the now great unknown. Chemo? Radiation? Nothing?

I remember when now over six years ago, I first got my news of what may or may not lay ahead. I remember the feeling. Feeling like the room was swirling or maybe my desk chair was swirling. Only in reality, what was swirling were my emotions.

The unknown components were hard. But I wanted to be ok, so I had to learn to have faith.

I want that sense of faith for my friend. She’s one of the strongest women I know so my money is on her. But I don’t want to just tell her, I want her to read it. So hopefully she will read it.

I want to tell her that I know she’s scared – that is totally normal. But I also want her to know she will get through it. Start small- set goals. First goal? Surgery. Then we see where we are.

I also want to tell her as a friend I cherish her. She is loved.

Bumps in the road. It’s part of life. We need to learn to roll with them. But damn, it’s hard. We would not be human if it wasn’t.

Love the people in your life and believe in them. I am blessed to have these women in my life. And I intend to have both of them around for so many years yet to come.

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#bullsh😡t , penn medicine

Let's recap: I have had three surgeries (breast cancer, full hysterectomy, knee surgery) and quite a few procedures over the past six years. I have also had radiation, a colonoscopy, an endoscopy, the flu, a sprained ankle, and so on and so forth. And ALL of the other doctors appointments that go with all of these things.

Twice surgeries or related to surgeries have conflicted with my Penn Medicine dermatology appointment. One time I completely forgot an appointment in the sea of medical appointments I have had the past few years. I felt awful. I had never done that before.

Most recently, this spring I had knee surgery. I could not drive for a couple of months BEFORE the surgery (driving leg was injured) , and could not drive for quite a while after surgery…and I am still doing rehab on my leg. After my surgery, but before I could drive, I had to cancel my at that point twice canceled dermatology appointment with Dr. Rudolf Roth, whom I really like and have worked well with.

When I canceled my dermatologist appointment, I actually spoke with someone in the dermatology office at Penn Medicine in Radnor. I explained that I literally could not drive and was so sorry to cancel an appointment. The woman on the phone said it was no problem, to just reschedule when I could. I asked at the time if it was a problem to reschedule in the summer, and was told that was fine.

I have this weird thing on my hand, and having had radiation treatment I am paranoid about my skin. So I went to mypennmedicine, the website Penn Medicine wants you to use…and let us not forget that their horrific phone system makes it almost impossible to speak to an actual human being most of the time. I went to my drop down menu to make an appointment and chose my dermatologist, Dr. Rudolf Roth, and completed the form to get an appointment.

I got a reply back that I did not see until about an hour ago:

What the hell???? This is Penn Medicine patient services? So I sent a reply back and yes I was damn snippy. I own it. But Geez Louise, why does someone tell me it's OK, just connect when I want to reschedule and this is the fine how-Dee-do? Are there zero patient notes as to WHY I missed the appointment that put me over the edge with the "patient services associate"????

So I went back to the menu of contact your doctors or whatever the hell they call it, and pull down my list of doctors, and guess what? They removed my dermatologist as one of my doctors.

Sorry not sorry but that is total bullshit. And I am calling bullshit on Penn Medicine. I have played by the rules, jumped through the veritable hoops of their layers of systems. And my goodness haven't I paid them enough co-pays over the years?

So yeah, I am venting via my blog. No one told me when I had to cancel my appointment earlier this year that I would no longer be a patient. I was told to reschedule.

This is crap. When Penn Medicine has gotten so big that patients aren't people, just bodies, it's a problem.

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cancer spam

I get dozens of spam comments a week.  I find cancer-related spam especially egregious. Today we have these people.  An organization no one has ever heard of, trying to use this blog to advertise their wares.

Here’s the 411: if this is how they try to get the word out, save your money, spamming is so totally bogus.

The nice spammer was kind enough to leave all her information.  Feel free to send HER spammy emails!

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