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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never go to the oncologist on friday the 13th

Posted on December 13, 2013 by carla

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(The beautiful Christmas tree is one of the ones at the Ritz Carlton in Philadelphia.)

New Rule: Never go to the oncologist on Friday the 13th of anything ever again.

No, breast cancer has not returned to pollute my body again but an ovarian cyst they have been watching is now annoyingly septated so I might be getting spayed in the future.

I am not borrowing trouble, it is what it is , and I will deal with it accordingly if that’s what my doctors decide. I guess I’m just a little bit annoyed.

But I would rather be a little bit annoyed, maybe have to get a hysterectomy, then have doctors who aren’t watching me and pop a side effect cancer as a result of Tamoxifen.

And then I had a huge reality check. I went into the chemo lounge at my oncologist’s office to get my flu shot. I was seated next to a woman older than myself who is living with stage four metastatic breast cancer.

That zooms you back down to earth very quickly. But for the grace of God go I could not be more true.

She was a lovely woman and we just sat there and talked. She wondered what radiation was like, she’s never had that. Just chemo. She takes oral chemotherapy at this point. You don’t lose your hair as much apparently with oral chemotherapy.

She drives in from Delaware once a month to get this oral chemotherapy and then goes home. She was so sweet and positive and just nice to speak with. It really was a nice thing to have met her. The funny thing is, after my appointment and flu shot I went to the Home Goods store near Penn Medicine at Radnor and I saw the same lady there as well!

I wish I had gotten her name. She is just one of those random people who touches your life and that will leave a lasting impression. I hope she has a Merry Christmas. She deserves it.

This whole experience today reminds me again of the fragility of life and how fleeting life can be.

Today I also saw two women who are friends of mine that I do not see very often. Neither one knows each other, I am the common denominator. I saw them both in the grocery store.

And then there was the humor portion of the day. My sweet man’s former mother-in-law sent a Christmas card here to the house addressed to him and my stepson alone. I apparently, am invisible. Pretty funny stuff. But I guess it must be hard for her.

I have been decorating like crazy and I am in love with my Christmas tree. It really is pretty.

For the first time in my adult life I am hosting Christmas Day for my family. I’m very excited to do this.

Life in time march on people. Grab the spirit of the season and keep those you love close to you.

Pax

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melinda

Posted on November 11, 2013 by carla

DSC_0362This is just a portrait.  It is of my friend Melinda who just finished her treatment a couple of weeks ago.  I think she looks fabulous.  A long time ago I spoke about breast cancer art. Not just the work of the SCAR project but other art as well.  Like this portrait of Melinda. Strength and living. The realization of better days ahead, treatment behind.

When we celebrate ourselves and our sisters on this journey, we need to look up and be positive.  We are, after all, alive.

Melinda and I spent the day together yesterday junking, antiquing, and barn picking…and being completely and irreverently and unrepentantly sarcastic. And I did not even think about it until she was leaving and she turned to me and said with a laugh “Do you realize we went through the whole day and did not say ‘cancer’ once?”

It’s true.  And considering we were two hot flashing survivors wandering around Chester County, PA that was pretty damn cool.

Melinda is one of the friends breast cancer has brought into my life. So see? In the midst of all the negatives exist the positives.

Happy Monday all.  On Wednesday November 13, please say a pray in remembrance of my father.  He has been gone 8 years.  I feel like I have lived a few lifetimes since then.

 

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fears and ridiculousness

Posted on November 7, 2013 by carla

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My last post was actually an essay by my friend Gwen Moran who is a writer and a damn fine one. In it she delves into some pretty personal feelings on her life after breast cancer. How she feels, and even fears.

You see, there is one thing that breast cancer alumnae don’t want to talk about sometimes: the below the surface hum of worry. It’s that negative little voice that just lurks in the back of your head from time to time. It is because of that voice that I have worked so hard to remain positive throughout this whole experience.

Recently, I received a comment from a woman who was once like a sister to me. She was one of the sisters of my ex-fiancé. She left a comment on a recent post where she basically said I was “milking it” after a couple of years of having had breast cancer. I decided not to post that comment.

The heat of that comment sort of struck me in the face, however. Was I “milking it”? So I thought about it. And the answer is no.

I continue to write on this blog even though I am one of the lucky ones who now has two solid years into a cancer free life.

Part of why I write is because of the women just starting on this journey that I continue to meet. I remember all too well when I was starting out and have not yet had my surgery, and I didn’t know if what I was feeling, or thinking, or even being, was normal.

Part of why I write, also has to do with the women I know post cancer. Women who are survivors or breast cancer alumnae like myself. Ask any of them, and they will tell you that this experience does not stop when you’re sent home after completing your surgery and all your treatment.

With the meds, and even just all of the follow-up appointments that become part of your everyday existence, it just goes to a different level. You move into a maintenance mode for lack of a better description.

But if we are honest with ourselves, much like Gwen wrote in her essay, every once in a while there are these almost ridiculous feeling fears.

Even I experience them. Not all the time, but they exist. Sometimes it’s merely a little wrinkle of concern that quickly dissipates.

Sometimes I have an often irrational fear of breast cancer recurrence, because I look at women I know with similar diagnoses and who have had different treatments. And wonder.

Sometimes I’m just afraid, because I know other women who have had to fight cancer more than once.

So the other part of why I write, is indeed still for me. Because putting my fears down on paper, even the virtual paper of the blog post, helps me cope. That my friends, is a selfishness I allow myself. Somehow I don’t think God and mankind object.

I can also tell you that sometimes I also have the most irrational fears about other people in my life. Breast cancer, to an extent, has turned me into a worrier. And it is really annoying sometimes. My rational mind knows everything is fine, yet sometimes I just worry. It is something I am working on, but sometimes it’s hard. Much harder than I let on.

But I work through it, I don’t want people reading this post to get all depressed or negative about this. It is just part of what you go through. And you have to be honest and acknowledge the good and the bad to stay on top and remain positive overall.

Breast cancer hits the core of women, and it isn’t just the physical changes caused by treatment or mastectomy, or a partial mastectomy or cancer drugs. This disease is a thing that attacks the psyche too. (Of course, the mood swings which can occur while you’re on tamoxifen, don’t help.)

Today is one of those days for me. So I am somewhat more introspective than other days. Of course, it also means my threshold for bullshit will be lower than usual LOL.

Life in time march on. I really appreciate my readers and those close to me who have stuck with me on my journey. There are some people who will not remain with me on this journey. That is the unfortunate attrition of life.

At the end of the day, it’s all good people. I am where I’m supposed to be, and I am loved. And I love in return.

Have a great day everyone!

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after the storm by gwen moran

Posted on November 6, 2013 by carla

DSC_0099Gwen Moran is a fellow survivor and personal friend.  She is also an amazing  writer.  Please take the time to read her essay After The Storm reprinted with the author’s permission here:

After the Storm

What lingers most after breast cancer is my persistent worry

by Gwen MoranThursday, October 31, 2013

“You look fantastic.”

Lately, I hear this statement often from well-meaning people, usually before a heartfelt touch of my arm or a tentative hug. It puzzled me at first because I certainly don’t feel like I look fantastic. I’m significantly heavier than I was two years ago and unruly shoulder-length waves have replaced my long, straight hair. Like a stranger trying to decipher a foreign tongue, I finally figured out what they mean: “I’m happy you don’t look like you’re dying.”

That was not the case roughly two years ago, when I was wan, weak and nauseated from chemotherapy treatments for my early-stage invasive breast cancer, barely able to walk from the bone pain. Or when I was bald and shuffling slowly around the house with my arms wrapped gingerly around my T-shirt-clad breasts, trying to keep the left one, burned from radiation until it was blistered, wet and peeling, from any painful swaying.

That’s what you get for trying to kill us, I wanted to tell it. Don’t ever do that again.

Before April Fools’ Day 2011, when I learned that my body had turned on me, I spent hours each week walking, biking, swimming and practicing yoga on the beaches of my beloved Jersey shore. Lightly tanned with visible muscle definition, I looked healthier than I had in years. A lie.

The sun’s kiss is gone and so are the muscles. Steroids, chemotherapy and inactivity, not to mention countless trays of gifted lasagna, added bulk to my frame. But I’m not dying — at least, not any faster than most people.

But the façade others see is not “fantastic.” Worse, it hides something dark and ugly; something few ever talk about in the tumultuous rush of stages, surgical options, hormone receptors and the alphabet soup of cancer-fighting poisons. More immediate decisions need to be made about how to best battle the disease that slowly eats people from the inside out. So, many months after chemotherapy annihilated everything in its path, followed by radiation beams that obliterated even microscopic cancer cells, I feel like parts of my brain and soul were killed, too.

Complaining feels churlish. After all, I made it through the storm and my prognosis is good. Surgery, treatments, and a year of $11,000-per-session gene-targeted therapy, administered through a needle piercing my chest every three weeks, have left me with 90 percent odds of no encore appearance in my breasts, lungs, liver or some other vital organ. This is according to some unknown statistician who calculates such things.

But even those odds, a bookmaker’s dream, aren’t a match for the persistent and lingering worry. Cancer is master of the sucker punch. What if it’s just lurking within that 10 percent margin, waiting for the moment when I’m too weak or tired to fight again? Some days, contemplating that question fills me so completely with fear that relief comes only from deep, jagged sobs expelled from my throat.

My loved ones are quick to chirp, “You’re doing fine! Remember those 90 percent chances!” I’ve stopped reminding them that breast cancer is funny that way. There is no disease-free “magic number” that actually does mark me cured. Each mammogram, stomachache or fever threatens to hold a devastating reprise, at least in my mind.

But now that my hair is back and the pink has returned to my cheeks, I suppose I do look fine — fantastic, even. I feel increasingly like my “old” self and there are times that I even forget about how cancer changed me. I run errands, giggle with my husband and daughter, and have thoughtful conversations with colleagues. I’m back on my bike and pedaled 10 miles the last time out. I make dates walking and gym dates with friends. It feels good to move and helps push the fear away. I feel stronger, both inside and out.

Still, it’s a struggle to rebuild what cancer and its treatment destroyed. While the rogue cells may be dead and gone, it’s difficult to trust my body again. Accepting that this is over — “looks like it’s cured to me,” as my oncologist likes to say — feels like tempting fate. I’m told that, as time passes, I’ll feel more at ease. For now, however, I wait for everything to feel normal again, wondering why the “after” of successful cancer treatment isn’t filled entirely with unfettered joy.

 

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you know you are over “pinktober” when…..

Posted on October 27, 2013 by carla

When Susan G. Komen co-opts even your eggs, it means enough of Pinktober. Here’s hoping the chickens that lay the eggs are not pink now too….

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