bedside manner, aetna?

Posted on April 9, 2014 by carla

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It has been a few days now since I wrote the post “my state of denial” . The response to that post has been astounding. I truly had no idea how much SO MANY OTHER WOMEN have gone through regarding healthcare coverage. I mean obviously I know it’s not just me, but when it is happening to you it feels very alone.

I thank all of you for your kindness and support, it means the world.

I write this once more from bed. I am circling over week three since surgery and although I know I am healing, I still have pain and the fatigue is unreal. People who know me know that for me to even say I am tired is a lot.

This is one of my favorite times of the year because this is when my garden emerges from beneath her winter covers. And while I can sit in a chair on my porch finally, gardening as in physically, is not happening. Even though my surgery was robotic, it was major abdominal and gynecological surgery, right? So when they say three to four weeks before easing back into a normal life, I am beginning to think they aren’t kidding.

Last night I woke up around 3 a.m. in pain. This morning I can really feel my internal stitches. And I am someone doctors say has a high threshold for pain. I guess that is true because given the size of some of the stuff that I remember them telling me they took out of me, some women would have been walking around in pain.

When I say “what I remember”, it is because I do not remember much at all from this surgery. When I had my breast cancer surgery I remembered a lot more details and my post-op was smoother. And that has nothing to do with my surgeons or surgical teams, because I know I have been blessed by having surgeons and teams that are the tops in their fields. But the hysterectomy surgery on March 20 was LONG and robotic and laparoscopic or not, it was invasive. And it wasn’t just in and out, they worked on me for a few hours. My sole memory of immediate post op when they first woke me up was brief, blurry, and full of pain. It wasn’t like that after my breast cancer surgery. But then again, this surgery took much longer than expected.

My post-operative care was hours, not days.

The pain was intense and very real. I did have allergic reactions to something because I remember my chest and upper arms feeling itchy and on fire (I was told they were red too) and my head and neck were swollen – and my neck wasn’t just due to having a tube in my throat. I remember my lymph nodes in my throat hurting and feeling pronounced. They gave me something to counter this reaction. Benadryl I think. I remember them also giving me heavy duty anti-nausea drugs in my I.V. because I was feeling so nauseated. And what do I remember about the pain meds when I got them in the I.V.? They made all across my shoulders feel hot as the drug entered my system. It was most unpleasant getting these drugs and I needed them.

And again, my post-operative care was hours and not days.

Does my insurer Aetna think for some messed up reason I didn’t want to go home? How about they see the reality that I couldn’t just sprint off the operating table and go home ? Do they think I am making this all up? Why do they treat my surgery like I had a hangnail removed ? Why do I feel like the hamburger from the drive-thru window?

Honestly, my breast cancer surgery was easier.

I needed to have this surgery, it wasn’t like getting a boob job or face lift. It wasn’t what they call elective or a vanity surgery. And every other woman I know PERSONALLY who has had this surgery post-breast cancer has had their surgery paid for and post-operative care. However, none of the women I know personally who had hysterectomies had Aetna.

But then there are then the other women I don’t know reaching out to tell me what didn’t get covered either through breast cancer or full hysterectomies. It’s horrific.

How can we NOT be covered for these surgeries? Do we as women set out to have breast cancer and other gynecological issues? I have struggled most of my life with issues from cysts and fibroids and when I was menstruating, having periods at different times that felt endless and were so heavy I practically felt the blood and stuff gushing out of me. (Sorry to be graphic, but that is what it was like). Then I ended up with a hormone driven breast cancer.

Since I got my letter of denial from Aetna I have had bad dreams every single night. All surrounding this letter – hospital bills I can’t pay for and then dreams of them canceling me because I complained about the denial and complained publicly.

I am trying really hard not to worry because I don’t want worry and stress to interfere with my healing. But I have to be honest the past few days have been hard. Even to the point of tears. And I don’t feel particularly attractive after this surgery as it is. I feel like I look awful. And I am just so tired, and tired of hurting. I cry when no one is around so I don’t upset my friends and family.

I have had one person at Aetna be very kind to me, a woman in their social media resolution team. But then there was this Aetna guy off their Facebook page. A friend of mine posted my post to their Facebook page. She is an oncology nurse. We have been friends since we were girls of 12. This Aetna guy has the bedside manner of a toad. All he cares about are “evidence-based” decisions.

Are evidence-based decisions one and the same with the individual realities of individual patients?

What my friend said is this:

” You can have all the evidence-based practices in the world but evidence and a patient’s reality are not one and the same. Just because you found the right evidence to support your profit-based decisions doesn’t make it right when a patient has complications and the original plan gets changed. We’re caring for human beings here, not numbers and “evidence”.”

As a breast cancer survivor we learn that our cancers are as individualistic as we are. Am I to presume that when it comes to other “female” surgeries that we are all the same “down there”? I guess what I had removed was just a bunch of generic Lego parts?

I did not set out here to be the poster child for women’s healthcare issues when it comes to insurance companies. All I want is what is fair: coverage. I pay for it. I pay every month early and on time so when I need my health insurance. Only they don’t seem to want me when I need them so I ask where is so-called healthcare “reform” in this country?

I am hoping Aetna will do the right thing, but after this Aetna guy basically dismissed what has happened to me with a couple of keystrokes, I continue to lose faith in the system.

This struggle between insurance companies and hospital systems hurts patients. It’s not fair, it’s not right, and all I am fighting for is to be covered. I deserve to be covered.

Women shouldn’t have to be forced to fight for the healthcare coverage they deserve and thought they were paying for. To me, healthcare has gone from being a comfort when you need it to being terrifying. How are we to guess what they cover and won’t cover? Is what is happening to me just the portent of healthcare to come? Hey Obama, are you listening? Do you care?

Thank you all again for your kind words of support. Between the damage we sustained from that horrible ice storm the first week of February, my mother having to have serious open heart surgery, and now this dance of health insurance coverage and denial I have had enough.

I am not looking for other than what I thought I was paying for: coverage. And for a giant healthcare conglomerate, paying for the paltry few hours of post-surgical care is such a small thing for them to do.

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my state of “denial”

Posted on April 5, 2014 by carla

photoplay-september-25-1932-007My hysterectomy post surgical care has been DENIED by Aetna.

Furious doesn’t adequately describe the white-hot anger coursing through me right now.

hysterectomyApparently spending over 4 hours on a surgical slab (instead of the projected 1 1/2 hours) having a COMPLETE hysterectomy, having almost as many things I am allergic to as my mother (even with an arm full of plastic allergy warning bracelets I did have an allergic reaction to SOMETHING while I was there a couple of times), indeed had severe pain…..it  wasn’t enough for them to cover me for post-surgical care.  Which was a matter of hours, not a matter of days I might add.

Apparently the scar tissue, cysts, and fibroids they removed along with my uterus, fallopian tubes, and ovaries wasn’t enough to cover me for post-surgical care.

Apparently, according to Aetna, a full hysterectomy is supposed be the same as ordering a burger and fries from the Wendy’s or McDonald’s drive-thru. Or like having a hang nail snipped off during a manicure.

What woman wakes up, snaps open her compact, powders her nose and says “Oh goody, I am going to have a hysterectomy today!”????

My surgery was medically necessary and so was my care.  Who the freak knew Ebeneezer Scrooge was behind decision-making for major gynecological surgeries at Aetna?

The irony is I have now spent a couple of weeks flat on my back recovering from this surgery.  I have had to come to terms and acknowledge to myself that yes this was major surgery. But to my health care insurer, it was just like a drive thru burger and fries or getting a hang nail clipped.

As far as Aetna was concerned I guess I was supposed to leap up off the operating table and rip out the catheter and sprint for the hospital exit.

Good to know as a woman I am valued.  Or is it I am only valued as a woman as long as I make no claims against my policy?

Note to the Obama administration: Obamacare is a big fat zero because the same old stuff keeps happening.  I was pushed out of the hospital after my breast cancer surgery and now this. I am done. This is B.S. and I am done.

I am throwing this back into the lap of my hospital and my surgeon.  There is no reason why I should not have been completely covered.  I figure if I can pay the outrageous pre-surgical co-pay BEFORE I have my surgery or they won’t give me my surgery than they can figure this out with Aetna.

I don’t know about you but I am tired of this nonsense surrounding “female” surgeries for lack of a better description. Because we all know if this was involving a man’s penis or a man’s horrid reaction to a little blue pill, it would probably be covered wouldn’t it?

Of course now that I am publicly complaining about Aetna, will they find a reason to cancel my policy even if supposedly they are not able to under Obamacare? See that is the thing: we are at the mercy of health insurance companies and conniving politicians.  Is it about our care or their profit margins and campaign finances?

Bottom line in the end: my doctors planned my care. They didn’t do anything unnecessary. This is crap.

denial

 

 

 

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made for t.v. moment

Posted on April 2, 2014 by carla

tweetieI am going off topic.  Yes, I know that doesn’t happen very often.  Well, sometimes it does.

So here we go:

As you all know, like many other female survivors of breast cancer I have had to recently have a complete hysterectomy.  As those who have had to do this also know, it is major surgery and like it or not they staple you to your bed and home for rest.

As you my readers know, sitting still is not my strong suit.  I have been reading, quilting, and watching waaaaay too much television.  (Eating bon-bons are out thanks to post-surgical diet.)

So I have been very indulgent in the area of “television land”.  I have re-watched Downton Abbey, caught up on Nashville and the Blacklist….and delved into reality T.V. drama.  The Real Housewives franchises for the most part amuse (not the O.C. ladies but Atlanta, New Jersey and New York in particular) as do some of the other shows.  I am not a Honey Boo Boo or renegade Amish people kind of watcher, I am all about good locations and good wardrobe.

I have watched the first couple episodes of the current season of Real Housewives of New York.  They never disappoint and they definitely have the best wardrobe.  One thing all of these shows has every season or so they last are people they are obviously “trying out” for these show franchises.  Usually they end up being some sort of frenemy.

So if any of you have been watching, there are some new faces, including this woman who is an “image consultant“. She is there to help a cast member with her “image” I guess because being a viper doesn’t make this woman stand out enough.

(I know, I know you all are thinking I need to get back out in the garden and I couldn’t agree more but I can’t right now as you know.)

So this “image consultant” keeps popping up as hand maiden/pit bull of the blonde and mighty.  There I sit in bed, perversely fascinated that people actually do this stuff.  Then it hits me: the image consultant is trying to up her own brand by being RHONY handmaiden and is probably angling to become a housewife.

(Yes, I really do need to get back to normal life.)

Flash forward to today and I am trolling twitter on my iPad because I don’t feel like reading, don’t feel like watching T.V., don’t feel like working on my latest vintage quilt restoration and it’s nice out and I am not allowed to garden. So I see these Real Housewife of New York tweets go by from one of the remaining two “housewives” I find interesting.

So I tweeted off a reply and well I mentioned I didn’t get the wannabe housewife.

(Yes, I opened Pandora’s Twitter Box.)

OMG only in the twitterverse, the wannabe house wife shoots me a reply…and calls me “sweetie” which is New York for patronizing and “you can’t comment on the goddesses.”  So I sent a reply and all of a sudden the “image consultant” has deleted her response to me.  I guess wannabes have to watch those piranha instincts until they get the Bravolicious nod or something?

Anyway,  her little temper tantrum in 140 characters or less  has provided me with much amusement.

Twitter does amuse me.  You see some seriously  funny stuff go by.  I don’t always get it, but I like to play now and again.

Oh and if you are interested I like Carol Radziwill and Heather Thompson.  They seem to keep it as real as you can get while living part of  their life out loud on a reality television show.

Now I have nattered enough on this weighty subject.  But a girl has to find amusement somehow while on bed rest.  I will spare you the dissertation on Nashville Wives and Southern Charm (both shows appall people I know in Charleston and Nashville).

Life is funny.  You see these other snippets of what others call their own reality and wow, life is so much nicer when you don’t swim with the sharks. And I will close by saying, please don’t pet the animals in the zoo.

 

 

 

 

 

 

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for family

Posted on March 31, 2014 by carla

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This post will be brief. I am still recovering from my surgery and I am tired and sore and not quite me yet.

This post is for families of women who have just received a breast cancer diagnosis. I have a couple of friends going through this and I wish I was closer geographically to them that I could just give big hugs. These are folks whose mothers are of the the newly diagnosed, and given the fact that my own mother is recovering from open heart surgery, oh my, I get it. Truly I do.

Every cancer is different and so is every cancer patient. But the best thing you can do for them is to believe in their recovery, believe in them, love them and be positive advocates. When we are fighting and as we go through our treatments and become survivors, quite frankly negativity needs to NOT be part of our lives.

Negativity + Drama = Stress. We don’t want that even when we are feeling sorry for ourselves or annoyed at something.

Cancer affects the whole family. We as the cancer patient feel alone and it is individualistic, but although it is happening to us, by proxy it is happening to our loved ones.

I am not going to tell everyone how to feel, only that being positive and resolving to see the other side positively made all the difference for me.

I will be blunt and say I struggled emotionally leading up to my hysterectomy surgery a little over a week ago now. I know why, and part of it had to do with part of my support system, my mother, being in the hospital and having open heart surgery two days before my surgery. I felt very unsure of myself, was even scared this time. A few old emotional demons haunted me. But in the midst of it was my sweet man, ever loving and ever patient.

I got through.

So you as loved ones can do this. Believe in your breast cancer gals and be positive and love one and other. We need positive companionship.

There will be plenty of days where it is all not light and love, but you as our support system can help us make lemons out of lemonade. You are also our advocates and extra ears at all the darn doctors and other related appointments. You are our extra eyes with the reams of paperwork. With a team of loved ones on our side we can conquer the world and ensure we get the best possible care. You make sure we learn to take better care of ourselves. Think of it as a team effort.

Even if you piss us off, don’t let us wallow in the darkness. Help us climb to the light of survival.

You all can do this. Just believe. And baby steps one day at a time.

Sending love to those who need it.

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health news stalkers

Posted on March 26, 2014 by carla

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To block or not to block?

Before my surgery this past Thursday I was left a voicemail message by an older woman who knows my mother. It was left on my cell phone the day before my mother had surgery and a couple days before mine.

This person left me a message which said “We are back [from our trip ] and we heard about your mother and we heard about you…..guess you won’t be the center of attention on Thursday after all will you?”

(Yes, that was the actual message and yes I have kept it. )

So this person was then one of three phone calls I received while I was actually IN Pennsylvania Hospital for my surgery. I was able to disentangle myself from that call even in a quasi post-surgical stupor and just say “thank you for calling but I’m not up to speaking.” (As in the truth)

Their call to the hospital sort of rattled me. I didn’t want it to, because I kept trying to look at the positive side of it that this person was just concerned, but it seemed intrusive.

However, since I have returned home this person has called my cell and then my home number. I haven’t answered the phone. Now it has sort of made me angry, because I’m actually supposed to be resting and their timing is such that every time they call I am trying to rest.

(Everyone who knows me knows that inactivity is not something I do well. And when I had my breast cancer surgery, I did not rest enough. I did not want to make that mistake again with this. I am hoping this will be my last surgical procedure of any kind for many, many years to come.)

Yesterday when this person couldn’t get me they then called a couple of my mother’s friends who have spoken with me. (They did not get them on the phone, either.)

Truly, I do not want to be rude to this person. I feel sorry for them, and I don’t think they realize they are being intrusive. It is simply that in part they assume a level of familiarity that really doesn’t exist. They aren’t my contemporary, they aren’t my girlfriend.

Unfortunately their calling at this point is almost stalkeriffic creepy.

If I had my druthers I would block their number but it would cause more issues.

And I hate to say it sort of reminds me of the woman that used to live across the street from us growing up who did something very similar when I was in the hospital when I was a teenager with cysts and fibroids for the first time.

Back then this woman kept calling around and wasn’t as pleasant about it. But then she went too far and said to my mother that she was a volunteer down at the hospital (she pushed a book cart from room to room or something) and “knew people” and would “find out”.

Needless to say thanks to my fabulous doctor at the time, she was in short order no longer a volunteer at the hospital. I bet she never told that story to her brownbag lunch gossip club. (Yes she had a gossip lunch club. Her house was on a hill too, and she kept big binoculars on her kitchen windowsill so she could see what was going on in the neighborhood.)

I guess I just don’t get some people and their obsession with hospitals and operations and health tales. I guess on one hand they just live for whatever gossip they can carry about, but on the other hand I still feel really sorry for them.

The bottom line is I’m pretty open about what happens to me, after all I do have this breast cancer blog. But even as open as I am, I still like my privacy. I still like my downtime where I can rest and recover.

I wasn’t going to share this, but then I thought about it and figured I can’t be the only one that is ever had something odd like this happen to them when they have been in the hospital.

Now that I have written this post and worked it through my head, I think I’m going to go back to something I wrote about when I was being treated for breast cancer and that is the simple fact that I don’t have to entertain anyone. I can speak with whomever I want, when I want.

And the rest? I will tune out.

I am really glad my surgery is over, and today I can really feel that a lot of the anesthesia has left my body. My pain is still present, but it is starting to lesson which means I must be healing fine.

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in patient

Posted on March 21, 2014 by carla

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This morning I woke up with a city view at Pennsylvania Hospital. I am home now, but it was a long 23 hours.

I had a full hysterectomy. Everything was taken out along with some apparently sizable cysts and fibroids. I remember my surgeon Dr. Sarah Kim making her hands into the size of a big naval orange.

I had no idea.

I had robotic / laparoscopic surgery. Unbelievably my health insurance view that as basically a day procedure.

I am exhausted and my pain is still somewhat fierce. My hand and forearm is bruised from IVs and needle pricks – As a breast cancer survivor who had lymph nodes taken out I only have one arm they can do all that with. And they ran out of veins because my veins ran out on me for a while .

My belly looks like a patchwork of little incisions, but it is a heck of a lot better than the full open surgeries of not so long ago.

I am somewhat stunned at how the cysts and fibroids have grown while I have been on Tamoxifen. I am so glad it’s over.

I received amazing nursing and one of my nurses named Kathleen lives not too far from me. Truly from the surgeon down to the sweet lady who cleaned up my room, my care was incomparable. But I also experienced healthcare today with all of its flaws and foibles.

Female gynecological patients don’t really have a segregated and quiet place in hospitals. Cancer and cardiac patients do. Women giving birth have maternity Nirvana. But women undergoing gynecological surgeries both simple and complex don’t have a segregated or particularly quiet place to be.

My surgery took much longer than they anticipated. I had a lot of years of internal scar tissue and no one quite expected the size of the cysts and fibroids…so everything took longer (and it explains why I feel like a truck has been running around in my abdomen.) I remember basically nothing from pre-op to post-op this time. They are just lost hours.

After post-op I was taken to a room with another woman in it. I was grateful to be next to a window because my hot flashes were wild after surgery. But the woman in with me was a bi-polar person who had experienced some kind of a break. I also think she was some sort of addict because they spoke to her about withdrawal. Well that and when I first came up from post-op her bed was empty and there I was all dopey and head spinning not so long out of anesthesia and this neurologist comes into the room and asks me about my “episodes”. I asked her if something I didn’t realize happened to me while in surgery…then they realized my “roomie” was on walkabout,

She was eventually moved as she needed to basically be on a floor where she was watched one on one because she kept taking off heart monitors and wandering or trying to leave. She wasn’t any danger to me, she was one of the most lost people I had ever met. But having someone like that in a room with me after I was literally just out of post-op was not relaxing. Also having someone like that next to me meant I was behind my pain last night instead of ahead of it because hospital staff was busy. She also had a bad cold which is unnerving to be next to right out of the operating room.

Then around 11 pm after I finally had dozed off they bought in a very elderly woman with severe dementia and her very LOUD family member who did not leave until close to midnight. Then the lady with dementia turned on all the lights and her television and proceeded to cough and scream until about 2:30 am when a quiet room opened up and the night nurses decided to move me.

Throughout all of this I wasn’t my usual self because I was right out of surgery. I am so grateful to these nurses and doctors for being my advocate. I discussed this with my surgeon this morning when she was making her rounds. She asked me to tell Penn and Pennsylvania Hospital when they send me the satisfaction survey and went on further to say that she and others have been advocating for better post-op set-ups for gynecological patients.

So I told her I would also do her one better and blog about it.

Between that and the television that costs $8 a day to an outsourced company who won’t turn it or the phone on without a credit card when the hospital specifically says leave all valuables at home, Penn is an amazing health system which needs to be tweaked more in favor of female patients undergoing gynecological surgeries.

I don’t know if this makes sense to any of you because I am writing this barely a day after surgery, and I am exhausted and I just sort of hurt all over. Well that, and I am also having a slight allergic reaction to one of the something’s they have me on.

I have some bed rest ahead of me. So I’m signing off.

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little life complications

Posted on March 13, 2014 by carla

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Life just got a little more complicated. And I will admit I am struggling a little, which is why I am writing about it. I don’t know how else to process.

My mother, who is normally like her own force of nature, is in the hospital.

She had rheumatic fever as a child. What none of us ever knew even though this thing she had in childhood has always been part of her medical records, is that more attention should have been paid to her heart through out her life. Apparently, what I did not ever know until now is that rheumatic fever can and generally does damage the heart.

The long and short of it is my mother needs her mitral valve either repaired or replaced. They made her in-patient when she was having a hard time breathing and a really weird rapid heart beat. They did that procedure where they shocked her heart to reset her sinus rhythm and she came through that beautifully. But other tests showed this damage to her heart no one knew existed. She has probably been living with this most of her life.

This has all been caught early which is crazy fortunate, but it is still a lot to process. This is my mother. The woman who is always on the move. This isn’t some old woman in orthopedic lace up oxfords who sits in a chair. This is an active woman who travels and is Madam Fashionable. Hair always done, make-up always on.

My mother is truly strong, and although my rational mind knows she will get through all of what lies ahead beautifully and be better than ever, there are still all the emotions surrounding the fact that this IS my mother. And when your mother is sick, the adult woman who is her daughter becomes a child. I don’t even know if that makes sense. It’s just how you feel. Your mother is your first Superwoman, she’s not supposed to get sick.

The emotions that surround relationships between mothers and daughters are intense, strong, complicated. There is nothing simple about it. As a woman it is part of who you are. Some might argue that, and that is fine. Mother-daughter relationships are layered. And like other relationships, it is one which evolves. The relationship you have with any parent as a child is very different than the one you have as an adult.

I know many women who have had extraordinarily complicated relationships with their mothers. I am no exception. But she’s all mine and I can’t imagine not having her to talk to, laugh with, fight with, get exasperated with.

I love my mother and to get that call “your mother is in the hospital” is just one of those your-stomach-sinks-like-a-stone moments. Especially when it’s a woman who doesn’t get sick.

She has amazing care and I knew today she would be fine when she told me she was trying to figure out how to get her hair done while in the hospital. That and she hates the food and the hospital gowns look like rags. Well she’s right there, hospital gowns are downright ugly.

This is actually a hard post to write. I have my blog critics and I have learned when you are too open, they see that as an opportune vulnerability and an excuse pile on. Today I say screw them. If they don’t like what I write about, how I write, or even me as a person they can go scratch. And that is why there is a delete button.

So as I face my surgery I am emotionally torn. I know my mother won’t be able to be there and well, that makes me feel like I am about six years old even if I just want her to be better and back to normal. The flip side is given my surgery I will be fine but like it or not I will be on bed rest and not moving around much or normally for at least a couple of weeks. So that means I won’t be with my mother as much as I want as she recovers. It’s just a big crappers life complicated moment all the way around.

We will all get through this and come out the other side stronger and better but I have to tell you I am just over the monumental pain in the ass that is this winter.

Thanks for stopping by.

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spay day is coming

Posted on March 4, 2014 by carla

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(painting by Philadelphia artist Geri Mack and use of image is courtesy of the artist. )

Yes I know I am being flippant about my upcoming surgery, but face it they are indeed spaying me.

When I last wrote on this blog I was anticipating the hysterectomy , and yes, my surgery should have occurred by now. Unfortunately for me, there was the little winter storm thing that hit the East Coast the first week of February. Ah yes, the ice storm. I forget what the storm’s name was (not that it matters because who came up with the idea of naming winter storms like hurricanes anyway? )

The ice storm was followed by more snow.

Anyway, the ice storm was particularly hard for Chester County, Pennsylvania residents. I think if I recall what I was told correctly, over 90% of the county was affected.

We took a direct hit to our home. We were very, very lucky we weren’t hurt. At 3:30 or so the morning of the storm our power went out. Then at a little after 4 a.m. a couple thousand pounds of a huge beech tree slammed into us. It was almost indescribable the feeling of that much tree weight slamming into the house. The house held, but it racked. We had branches through the roof, a five foot branch through a smaller roof and ceiling, and when this tree hit the house it hit the wall outside our bedroom with such ferocity that it not only punched a hole in the wall six inches give or take from my sweet man’s head, it broke the slats in our mahogany headboard.

No lie, it was scary. I have even had nightmares about it since.

We were a week without power and ten days without television, land line, internet, or centralized heat. And oh yeah, we are on a well, so no electricity meant no well pump or running water. We kept the house heated with our wood stove. O Pioneer and all that good stuff.

I read a lot of books and repaired and requilted sections of vintage quilts that needed mending. I must say that #IceStorm2014 was kind of isolating.

In the middle of all this I had tamoxifen issues again with CVS. I had switched stores to one closer to where I live and I get a call from a substitute pharmacist telling me Teva no longer made my generic. Which of course is NOT true, they just don’t sell it in 30 day count pre-packaged bottles. Anyway, enough of that Groundhog Day as CVS seems to have issues with this before. Suffice it to say for the second time with a CVS I had to straighten that out. But Teva’s generic is the only one I don’t have reactions to on top of the normal obnoxious side effects.

So……given that all of this tree on house/winter storm after winter storm stuff was a bit overwhelming so I pushed my surgery date back a bit. I decided that the stress of this storm and it’s aftermath wasn’t the best thing to combine with surgery. My surgeon agreed.

Well now spay day is looming once again, and at this point I am just anxious to have it all over and done with. I am a little antsy about it now and the idea of a catheter in during and after the surgery is not my favorite thought of the day.

BUT (there is always a BUT)…..doing this will keep me from popping a secondary cancer that I would worry about for years to come given my history. And of course much like there are a million breast cancer surgery stories they are a million hysterectomy stories. I have only really listened to a few of my friends who have had them. These are cool and practical women who won’t moan about it for decades like one of my late father’s aunts.

I have continued to meet some really cool survivors, incidentally. Cheers to all of you out there because you enter my life whenever I am struggling with things like my upcoming surgery, those damn hot flashes (which right now include occasional night sweats), and self-body image.

The self-body image is a weird little rabbit hole. Most of the time I am fine, but every once in a while comes this passing wrinkle. And it can be hard. But the reality is I am very, very lucky so being lop-sided is a small price to pay. But I continue to have to acknowledge that breast cancer occasionally messes with your femininity or inner girly-girl. Even after you are past your surgery and radiation or chemotherapy.

It has been a long winter, for sure. In anticipation of more accommodating weather, the painting in the post today is by my friend and former teacher, Philadelphia artist Geri Mack. I love her work – it makes me smile.

Thanks for stopping by.

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here we go…

Posted on January 17, 2014 by carla

DSC_0006So like many breast cancer survivors, my medical team has decided that I should have a full hysterectomy.

In my case, having dealt with gynecological issues like ovarian cysts and fibroids since I was a teenager, I will admit it comes as a relief.  Especially because neither my cysts or fibroids have improved post breast cancer.  If anything, we’ll say they are acting up and leave it at that.

I met with my surgeon already and am scheduled. I would be lying if I told you I wasn’t nervous, because I am.

But the big picture is the parts don’t work, they have never worked and I am looking forward to peace of mind where these issues are concerned. And being able to reduce the odds further of a secondary cancer is huge in my mind because if I am brutally honest I do have risk there.

Of course, in retrospect I can’t help but wonder if I had tried to go this route years ago instead of being put on hormones, would I have ended up with a hormone driven breast cancer in my 40s?  I will never know, but to women younger than myself the take away lesson is even when you are strong advocate for your own health, you can never ask too many questions.

Onward and upward.

 

 

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stop the presses

Posted on January 13, 2014 by carla

DSC_0008A friend who is a writer and breast cancer survivor has been talking this morning about something I had not heard about, but now I have and I am appalled.

Two writers, one from the New York Times and one from The Guardian  (and apparently a married couple) have decided to tag team a woman who writes about her stage 4 breast cancer named Lisa Bonchek Adams.  Lisa writes about her cancer on her blog, twitter , and Facebook.

Lisa Bonchek Adams is living with a horrible stage 4 cancer that threatens to eat her alive from the inside like a twisted game of Ms. Pac Man. So if she wants to dye her hair purple and run around in chartreuse polka dots it is fine with me. But I digress.

Cancer isn’t a four letter word. It just makes you want to spout them occasionally.  It isn’t a beauty pageant, either.  It is raw, it is topsy-turvy and you experience emotions you did not even know you possessed.

I am one of the lucky ones.  And I think dealing with all of this is scary enough some days.  Lisa Bonchek Adams who I never read before today is dealing with so much more. So much more.

And for a husband and wife who write for different media outlets (him, Bill Keller The New York Times and her, Emma G. Keller The Guardian) to tag team this woman because of how she chooses to discuss or even deal with her cancer is just so off the charts wrong to me.

You see, it is not the fact that they have a differing opinion from Lisa Bonchek Adams on how she deals with her cancer, it’s the fact that these two write for the monster media conglomerates, are married, and oopsies are both writing about this? Talk about pillow talk!  What I want to know is if from a journalistic point of view have they crossed an ethical line? In my humble opinion they have.

As I read their editorials, wow was I disappointed in the craft of journailsm. I am so sick of people who judge anyone who has or had breast cancer writing about the journey.  They have absolutely NO idea what it is like to deal with this disease.  NO idea. I have said it before and I will say it again that breast cancer is a very public disease with a very private face. You get it and you know millions have it or have had it, but there are some days you feel so alone like the only one on the planet who has it.

And then there is the emotional component.  Some of us are alone when we get our diagnosis, some of us are parents and step parents to young children, and some of us are just embarking on the rest of our lives and quite young. You get a diagnosis and your head spins the first time.  You go through surgery, treatment, post-treatment and your head spins more on occasion.  Every mammogram and blood test and gynecologist visit the rest of your life will always give you pause, even if you are positive.  Because as breast cancer survivors we always live with the secret fear of “will it come back?” We live with medical histories that are now stamped “cancer”.

I know many women where the cancer has come back. Sometimes as breast cancer, sometimes as other cancers. So for a pair of seasoned journalists to take pot shots like this at a woman dealing with 3 children, a family, and stage 4 breast cancer? Wow. Words almost escape me.  Then they don’t.  Here is the PG-13 version: J-E-R-K-S.

Writing about my breast cancer was a saving grace.  It was a and is a comfort.  Because I have had the ability to do this, write about my journey with breast cancer, it was an extremely productive coping mechanism for me. Being able to get it out and write it down kept me moving forward. And when I have a down day, I still look back to see how far I have come.

I am proud of myself for being able to share this journey on a blog and so are the people who love me.  Through this blog I have met some amazing people. I have also met some through Twitter, because umm yes, I Tweet too.

As a woman who has had breast cancer I can’t read about the disease every day.  I can’t even talk about it every day.  As someone who is more than 2 1/2 years cancer free at this point, the reality is I might not think about it every day, talk about it every day, but it is part of me.  It doesn’t define me, but it is part of me.

Not too long ago, someone who used to be a very important part  of my life and who was a huge support to me when I was going through treatment left a comment  saying my continuing to write about this breast cancer stuff was “milking it.”  I don’t see it that way so I told her so.  I believe she said that to be deliberately hurtful and I am sorry for her that she feels the need to do that because she is someone whom I will always remember fondly to the end of days.

Matthew 7:1-3 King James Version

Judge not, that ye be not judged.

But people are definitely weird when it comes to dishing cancer.  Some people are super secret about it, some people are living it out loud.  I was, and continue to be open about it.  I do that partially out of respect for the kind and caring women I know who were open about the disease when I received my diagnosis.  They wanted me to feel less alone and helped demystify the terror that comes with a diagnosis.  It is the worst kind of scary unknown. Because of these women who shared with me I was able to get through and remain positive.  And I have told you before, some days that positive thing was a very hard goal to keep.

I don’t know this woman Lisa Bonchek Adams who was targeted by this husband and wife pair of seasoned journalists from Adam’s Housecat. I never read a word of anything she has written until this morning.  When I heard about this I dropped everything I was doing around the house and stopped to read her.

To Lisa whom I have never met I say “Brava”. You keep on doing what you are doing. And what is that saying? F them if they can’t take a joke? That too.

And to journalist  Emma G Keller and her hubby Bill Keller with their career defining moments here, I hope neither of you ever becomes ill.  I don’t think you could handle it. And it must be a pretty slow and pathetic news day when journalists like yourself have to target a woman with breast cancer.

Some of my mentors are journalists.  Thank god none of them would do something like this.

Here are the articles:

The Guardian: Forget funeral selfies. What are the ethics of tweeting a terminal illness?

Lisa Adams is dying of breast cancer. She has tweeted over 100,000 times about her journey. Is this educational or too much?

    theguardian.com, Wednesday 8 January 2014 13.40 EST

Lisa Bonchek Adams is dying. She has Stage IV breast cancer and now it’s metastasized to her bones, joints, hips, spine, liver and lungs. She’s in terrible pain. She knows there is no cure, and she wants you to know all about what she is going through. Adams is dying out loud. On her blog and, especially, on Twitter.

She has tweeted over 100,000 times about her health. Lately, she tweets dozens of times an hour. Her Twitter followers are a mixed bag. Some are also battling cancer or work in the medical field, others seem to follow Adams’ life story like a Reality TV show….You can read all about the details of her disease and treatment on her blog right up until about this morning, which is when she posted her latest entry,  only a few hours after the previous one.

The New York Times:  The Opinion Pages|Op-Ed Columnist Heroic Measures

JAN. 12, 2014 Bill Keller

LISA BONCHEK ADAMS has spent the last seven years in a fierce and very public cage fight with death. Since a mammogram detected the first toxic seeds of cancer in her left breast when she was 37, she has blogged and tweeted copiously about her contest with the advancing disease. She has tweeted through morphine haze and radiation burn….When my wife, who had her own brush with cancer and who has written about Lisa Adams’s case for The Guardian, introduced me to the cancer blog, my first thought was of my father-in-law’s calm death. Lisa Adams’s choice is in a sense the opposite. Her aim was to buy as much time as possible to watch her three children grow up. So she is all about heroic measures. She is constantly engaged in battlefield strategy with her medical team. There is always the prospect of another research trial to excite her hopes. She responds defiantly to any suggestion that the end is approaching…..Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.

*Please Note* The Guardian has removed the article as of this afternoon. I found an online archive of it but I don’t know how long it will stay up. CLICK HERE

ONLINE ARCHIVE of article

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