KNOW YOUR PATIENTS BILL OF RIGHTS

Sometimes, as patients it's easy for us to sit back and let someone else take care of us.  But being a patient isn't that simple.  You have to be on your toes now more than ever, and there are things that you should know in order to ensure that you receive the best care possible.

You have the right to demand all copies of your medical records for your own personal keeping.  Don't rely on one doctor to openly share it with another.  They require your approval, and then the reliance on someone in an office to actually send them.  If you have your own copy, you can simply make a copy yourself and take with you.  But it also helps to read through the jargin yourself, to remember the terms, the condition, and also not feel as if you are alone in the dark when the specialists are communicating in the room as if you're not there.  I make sure that I know the terminology so well that I can repeat it back to them if necessary.  I am able to finish their sentences, correct them on the terminology.  If anything, it makes them stay on their toes around me, making sure that they know as much about my diagnosis as I do.   Also, feel free to talk through all of your results with the doctor, with the pages there in front of you.  Know that no one knows your body better than you. 

See, I have a high threshold for pain, which I inherited from my mom.  I don't bruise easily, and when I do I usually have no idea how I've gotten it.  So when I do have pain, I know that I have to keep it under control and managed or it will become unbearable.  After my double mastectomy (otherwise known as a bilateral right modified radical left prophylactic mastectomy in the medical field), I describe my exact pain to my breast surgeon (my pectoral muscles feel as if I've done a massive bench press workout), and I remind her of my threshold (basically that I need the good stuff).  Being the professional that she is, she tells me that when I check out to tell her assistant that I need Percocet and Valium. Fast forward to two hours later when I'm checking out an entire day earlier than expected (because if there's one place you can't get any rest it's in a hospital),  I tell this to the young doctor to be, who's dismissive and tries to tell me that codeine will be enough.  I hold my ground.  I know my body, not her, and tell again exactly what I'd need per Dr. Estabrook and that if she isn't going to provide it that I will just walk over to her office upon my departure.  Needless to say, she pulled out her pen and started writing.  Ok, so a little threatening on behalf of your own health goes a long way too.

It's very easy to simply allow the doctors to 'do their jobs.' But think about it.... You are one of dozens of patients that a doctor must keep track of.  And, even though it's hard to believe, a doctor actually has a personal life.  Who knows what's happening with his kid, or her spouse or even if the doctor is dealing with medical condition of her own.  Not to mention all of the medical terminology that one has to keep straight.  I mean I know it's a doctor's job, but that's a lot to keep in one brain.  When it comes to your own health, or that of a loved one you're an advocate for, there is a no holds bar on the amount of information you are privileged to know.  And the last thing you should be worried about is making sure you don't hurt the feelings of or step on the toes of your doctor.  You are not there to make her/him better.  They are there to make you better.  Be sure that they do.

TONIGHT's LESSON: always ask questions

So when it comes to being told that you have Stage 3 Breast Cancer, or any disease for that matter, it is better to have it repeated to you over and over again, at least it is for me. I know that sounds a bit morbid, but the more I heard it the more it became easier to cope with and then treat.  Whenever I meet with a doctor, I become that anal patient that has a list of questions, feeling like a reporter doing an interview, at times becoming a bit on the offensive.  'How do you know this will work?' in which the response was, 'we don't.' or when Graham asked the plastic surgeon, 'how many times have you done this operation?' in which Samson replied, 'unfortunately, we do almost a dozen a month.' We would sit at home, and think through every possible scenario, circumstance, possibility, and write it down to ask the doctors.  No question is ever too stupid, simple, frivolous.  This is your life, your body.  So when I empowered myself with all of the knowledge I felt I needed, it then became easier to know what I would do when given any opportunity.  I had a battle plan, and with that I was able to move forward, full steam ahead. 

IT'S BEEN ONE YEAR...

It's been one year today.  Exactly one year since I've been told, 'You have cancer.' There are times when  it seems like just yesterday, times when it seems like ages ago and times when it seems like it's all been one long dream.  I do remember the feelings of 'how will I ever get through this.'  I especially remember the feeling of how will I tell my parents, as if I had done something wrong.  I didn't hesitate telling Graham, I can tell him anything, and I had to.  He's been my sounding board through all of this, my rock, never wavering. But it has been one year, and I can honestly say that I have no regrets.  

I started this all, the writing and blogging that is, because I didn't want there to be any worry of what was happening to me.  I wanted my family, mostly living far from me, to be able to go through their daily lives without having others question my diagnosis or treatment.  I wanted my story to be told my way, with my words, and not anyone else's.  Little did I know what it would turn into. The writing has helped me more than words can say, literally. And I'm glad it's been able to help others, to either cope or understand or even to put perspective on one's own life. I do however feel there are precursors that should have been stated at the beginning of this, but I would never have realized had it not been for having cancer.  Over the next weeks I'll be posting them as I continue this next part of my life.

Funny thing though ....., this morning I put on a dress which I haven't worn since my exchange surgery, and though it beautifully fits or so I thought, there is something a bit, well, off.  As I leave my building and start the three block walk to the subway, I feel it, a breeze I never felt before.  I look down and realize I am on the verge of pulling a Tara Reid.  SERIOUSLY!  I start brainstorming, do I have time to go back inside, can I hold it together until I get to Duane Reade?  (cue lightbulb) My dry cleaner!  On the way to the subway, my Korean friend waves her daily good morning smile, and quickly detects the worried look on my face as I dart inside.  'Can I have a safety pin?' I hastily ask.  Before I can finish the request, she holds one out over the counter, and laughs. 'They nice, but you don't need brag about them!' Ah, the things I can look forward to.  However, I'm a bit relieved....I felt something, which means the nerve endings are trying to reattach. Things are indeed looking up, or at least my new breasts are!

Check out this blog.

http://inshanesbrain.blogspot.com/

Great blog by Shane Morgan.  Thanks for the shout out Shane, and sorry that it’s taken me 8 months to see it!

tribute to ERICA ...

I honestly can't remember the first time I met Erica.  Seriously.  It's only because we were so young when we first met.  I was maybe five years old, she a year older.  We were on the same softball team, and her dad taught me and many others how to play the sport.  The CATS, that was our team name.  What I do remember ever since I've known Erica, is her smile and laugh.  She was always the pillar of optimism and fun, and an even better athlete.  As we grew up, she may have gotten older, but she never changed.  Everyone that ever met Erica feels the same way.  Go ahead, ask them.  There was just something about her.  We were cheerleaders together and spent many weekends traveling to sporting events.  After high school, I didn't hear much about her only because I moved away.  It happened with almost everyone I knew growing up, until the invention of the internet and then Facebook. 

She graduated high school in 1992.  She then went on to study and graduate from Southern University in Baton Rouge, LA.  She married her love Kendrell, and has two boys - one who will graduate high school this year and the youngest will start kindergarten.  She became a teacher and continued to share her happiness.  For the past twenty years, she lived her life, as we all do. 

She was one of those that were slow to get on Facebook, this past January to be exact.  She turned 38 on May 5th.  I reconnected with her soon after.  See, Erica was diagnosed with cervical cancer.  Her treatment was complicated due to her living with Lupus.  She was only able to receive one round of chemotherapy.  But, as with some treatment, more complications arose.  She developed a blood clot in her leg and treatment had to cease.  She remained in the hospital where they put stints in both of her kidneys, drained fluid out of her abdomen.  Her blood levels were so low that she required blood transfusions.  The community came to her aid.  They held blood drives, several in fact, to give her what she required.   Hoping that it would all make her better, she was scheduled to be transferred to MD Anderson by the end of the month although her family was fighting to get her there sooner.  As her dear friend Christy put it, sometimes all we get is 38 years.  She held on as long as she could, but those that loved her most knew that when there was no laughter left, that her time come was coming to an end. 

Erica passed away last week.  Tomorrow, she is being laid to rest.  When you read her Facebook page, it's filled with the same sentiments that I mention above: 

• "Your smile and laughter will be truly missed!!!"
• "I will never forge that big smile and loving personality!!!!!! I love you friend!!!!!"
• "Thanks for putting a smile on my son's face everyday at school. We will truly miss you!!! You were such a loving person."
• "Oh how I will miss my friend Erica!!! Our hearts will always be filled with love and great memories that we shared together."
• "Words can not express how I feel right now. I've been crying and smiling all day. Crying bcuz I will miss my friend Erica so very much! But as I sit and think about her I can't help but to smile. She has touched so many with her energetic personality and bright smile. I love you dearly Erica and will miss u so very much."
• "I will always cherish the time I've spent with you. Such a beautiful and loving person. I will miss you, your smile, and your laugh."
• "One of the hardest parts of life is saying goodbye to a dear friend. Erica you were like a ray of sunlight to all the lives you touched..always supportive and willing to assist."

The time we have is precious.  Erica lived the best she knew how, by giving laughter and love to everyone she came in contact with.  Nothing hurts more than losing someone who deserves to have everything, including living a long life.  As I've said before, cancer knows no prejudice.  It doesn't care if you're a man or a woman, a grown up or a child, black or white, or even if you are an amazing person who's done nothing more laugh and love. 

So my wish for all of you this weekend is to take time to be thankful.  Whatever your beliefs, we are all here on borrowed time, and it's what we make of it that matters.  Nothing else.  Be kind to one another, volunteer, give blood, donate goods.  And if you can't think of anything to do for others, simply smile, because it does in fact go a long way.

Erica Joseph-Rapp (May 5, 1974 - July 28, 2012)

A wife, mother, daughter, sister, and dear friend.

GETTING RID OF THE ROCKS!

It couldn't come fast enough. The rocks, otherwise known as the temporary tissue extenders, are becoming a bit painful.  They literally feel like rocks on my chest. They are hard, the right more than the left due to radiation.  When I give hugs, I can see the perplexed looks on people's faces as we pull apart, as if to say, 'what the hell was that?' Sometimes I think they would want a second hug just to confirm that what they felt was, well, was indeed what they felt. And my sadistic self happily continues to give hugs just to weird people out more and more.  Another plus of having a mastectomy and reconstruction.  Hey, don't judge.  I think I deserve to have as much fun out of this as I can. If breasts could have a hard-on, then that's what I have, for nine straight months. And if you think that guys find it attractive, think again.  Well, at least not my guy.  Graham, in the sweetest way possible, mentions how much they hurt him when I pull him close for a tight squeeze.  I won't get into the details of our sex life, but needless to say we've had to make some compromises in order to make it convenient for us both.....
But now, well now it's all different.  I had decided to put off having my exchange surgery until after radiation.  Even though there is discomfort, some times worse than others, my doctors and I (always with Graham in tow) discussed it at length.  Since I had all of the focus of radiation be on my right breast, in three different locations (top, bottom, and armpit side) which meant complete skin and tissue damage to the entire region, I would wait until afterwards to get the permanent implants.  If I were to have the exchange surgery prior to radiation, there could most likely be additional damage to the implant itself, which would then mean returning in a couple of years to do it all over again.  So if I was going to do this at all, I was going to do it right the first time.  Because if there is one thing (and there have been many things) I've learned throughout all of this , it's that time is precious.  It seems like it's an easy decision, but as time has gone on, the pain from the rocks becomes more and more prominent.  I just have to keep it all together, and hold out, believing that the choices I have made are the right ones.
And as of now, I feel I made the right decision.  Radiation did do damage, not only on the outside, but on the inside as well.  When you compare the skin from left to right, not only is there an obvious color difference (the right side is darker, including the armpit), but the left skin has much more natural pull and squeeze to it, while the right is tough and feels muscular.  The scar tissue that has formed on the right has locked the rock into place, even though it has reduced the scar visibility from the mastectomy, one of the only pluses of radiation.  So the outcome on the left, is that the rock has started to slide a bit to the side, and drop down simply due to its natural weight and consistency.  I have been forced back into wearing bras (something I enjoyed not doing since my initial surgery less than a year ago and before then hadn't done since sixth grade) under any shirts that have prints, especially stripes, since you can definitely tell that something is a bit 'off tilt.'

I return to my genius of a reconstruction surgeon less than three months after the end of radiation to make a plan.  He does all of the pinching and squeezing necessary on both sides demonstrating what he is going to have to do and why.  To solve the left side slippage, he is going to add an interior stitch to hold the implant in place.  For the right side, he will go in and literally scrape away all of the scar tissue radiation created. To help resolve any areas that need additional tissue in order to shape the breasts into any sense of equality, he will take a little fat from my upper stomach region, going in and up near my belly button. (pause, pause, light bulb) what?  I do get that tummy tuck? This keeps getting better and better! 'Shouldn't you use the fat below the belly button? I mean, there's more there to work with.'  He smiles and says, 'That area will be easier to take from post surgery should it be necessary.' I cross my fingers and secretly wish something happens so that I get two tummy tucks out of this.  He starts to go through the next steps.  Because I'll be out of town mid August for a month, he fits me into his schedule immediately so that there's time to do post surgery follow ups, which means he gives me less than two weeks to prepare. But it will be a cinch he says.  I'll go in at 7am, the surgery will last a couple of hours, I'll be home by early afternoon.   I'll be sore , mostly in the stomach region due to the liposuction (smiling on inside), and in a couple of days I'll be ok.  Nipples?  When do I get my nipples back?  Later, after I've healed from the surgery and there in his office.
So preparing for the surgery is a piece of cake.  My best friends are available, so instead of us figuring out childcare at 6am, Graham stays behind with the girls and my bigger girls join me at the crack of dawn. It all starts coming back to me.  The ambulatory waiting room filled with people waiting to go under the knife, some who haven't eaten for over 12-20 hours depending on their procedures.  Nearby are their loved ones, trying to do anything they can to be comforting.  You can tell who is going into surgery, not by the fearful look on their faces, but by the hungry looks.  I'm a believer in the motto that you don't know what you want until you can't have it.  I'm called to the prep area, curtain #10.  I sit, fill out paperwork, change into my surgical gown, which conveniently velcros down at the shoulders for ease of surgery (even has a couple of plug holes for you to insert the vacuum like tube for heat).  I sit and wait a bit longer, until they call my girls back.  We're like giggling teenagers, as the anesthesiologist assistant comes and puts in my IV.  Then the surgeon arrives.  His assistant takes them away as he closes the curtain, takes a marker out of a sealed packet (it's all about the germs), and starts marking me up.  I'm then ready.  I give kisses to my girls and walk down the same hallway I did for my mastectomy, into the same operating room, except this time my feeling of anxiety has a bit of happiness underneath.  It's all a bit surreal. I hop up on the table and go to sleep for a couple of hours.
When I wake, I feel as if I'm already a new woman.  The first thing I do is put both of my hands on my new breast, and immediately I let out a sigh of relief.  They're soft.  They feel a bit bruised and swollen, but they are soft, incredibly natural feeling, almost as if all of this was a dream.  Graham brings the twins to me, and for the first time throughout all of this they see me in a hospital bed.  It is important to me that they see me in the hospital at least once. They've handled all of this amazingly well.  And even though we have been upfront, open and honest with them, they have never seen me with tubes, in a bed, in a gown, in a place other than the comfort of our home.  They've seen me sick, down, unable to hold or even hug them.  For some reason it's important to me that they have a memory stamped in their head of me in a hospital, albeit I'm laughing and smiling.  But I feel their vision of cancer has been .... I'm not quite sure how to say it ....too easy?  I'm a hard ass, yes.  I want to protect my children from as much trauma as possible, yes.  But cancer isn't easy to say the least, and I want them left with a bit of realism.  I can see a bit of fear on their faces as they peer around the curtain, and even though they are relieved once they see me they are cautious.  They want to stay and watch over me, protect me.  They slowly but surely show me their smiles, and in less than three minutes they're back to being four year olds.
I'm home by mid afternoon as my doctor promised.  Graham puts me to bed as he goes to the pharmacy to pick up the final prescription that I demanded - Valium.  See, immediately after the surgery I was reminded of the lifting and shifting of the pectoral muscles that occurs.  My breast surgeon recommended Valium to me that first time in the hospital when I mentioned it felt as if I had done a hundred bench presses.  My reconstruction surgeon assistant this time was all too happy to oblige.  You can't get something if you don't ask!  She actually calls me on my cell for the number of my closest pharmacy for her to call it in directly before she leaves for the day.  Now that is service!  Besides the Valium, I'm on Vicodin for pain, antibiotics to prevent infection, and asthma medication.  My reconstruction surgeon told me that there is no fool proof study shown, however he's seen that taking asthma medication for 3 months after this surgery (not sure if it also works on others) reduces the possibility of scar tissue forming, all that crap that he scraped away. There's something about the medication keeping all of the tissue pores or glands open as much as possible while the body heals.  I'm all for it, but my insurance isn't.  So I pay another hefty premium for pills.  Whats another couple hundred on top of the $42k+? 

As for my breast?  They feel great.  The right side is a bit swollen from the scraping of the scar tissue, even after a week but it is getting better.  The left side is even and intact.  The inner cleavage area has a bit of yellow, jaundice coloring due to the addition of fat tissue to even things out.  But I do have cleavage again!  And the liposuction stomach?  First, you can't even tell it even occurred.  Second, what the hell? Why anyone would voluntarily have this done is beyond me.  The pain is excruciating, and only just bearable after five days. If I remain still, I can't feel a thing. And if you truly know me, you know that I can't remain still.  So after the painkillers run out, I'm onto sucking it up, so to speak.  My scarring is less than a three inch horizontal where the nipples and areolas will go.  I'll go for another follow up before I head to my college alma mater.  When I return at the end of September, I'll go in to doctor's office, have local anesthesia, and get my 'tassels' put on!  I'll talk to you then if I'm still interested in more of a tummy tuck!

And all of this, and it's almost the one year anniversary of the mammogram that told me there was something suspicious.

THE COST OF CANCER

I've never been horribly sick, meaning so sick that I've had to depend on the medical industry in order to lead a normal life.  I have however always had health insurance though, the lowest amount necessary to cover basic needs like breast exams, pap smears and flu shots.   It actually wasn't until I was pregnant with twins that I even felt thankful to have health insurance, what with all the ultrasounds, check ups and c-section.  Penelope was breach at 24 weeks so we knew then there would be no room to move around, no matter how many downward dogs or hand stands.  We chose a date of 4/11, but as with everything else in life things don't always go according to plan.

I also attribute it to luck in life.  Our twins were born healthy, at about five pounds each and breastfed immediately.  But on the day we were to leave the hospital, Sophia was a little under weight, I was told by a couple of ounces. I heard stories of families that would have to leave one child in the hospital while having to take the other home. My heart sank.  (I have dear friends who are coping with this issue at this very moment, and i cant imagine the turmoil.)  I demanded a bottle of formula. Knowing that it was a mere two ounces, I was going to do everything I could to make sure we went home as a family.  I fed Soph and she drank like a champ. I demanded they weigh her as soon as she had finished the last drop for fear she'd pee it out.  And it worked.  But as a new parent, you leave the hospital and become worried about any harm that may come to your child.  And it wasn't until we had twins that I ever ended up in the ER (except when I drove a college friend when he almost got his foot mangled).  Ellie broke her leg at two. I almost cut off my finger.  Soph had complex febrile seizures.  (We've started to think that it's really Graham with the luck.)

But I knew it. I knew the moment I felt that lump, nearly a year ago today, that I had the wrong insurance. None of us were ever sick. No asthma, no allergies, no chronic illness. We just needed the basics. But not with cancer. So the moment  I felt the lump I knew the lack of insurance would kick my ass more than the cancer itself.

I started keeping my medical binder when I got my biopsy results. The one inch has turned into the two inch.  And the confusion of co-pay, in network, out of network, deductibles and more have confused me beyond reason. There are times I go to a doctor and don't pay anything and there are times my co-pay can be either $10, $30 or $55.  Now grant it, I've been seen by my general practitioner, gynecologist, breast surgeon, reconstruction surgeon, medical oncologist and radiation oncologist, not to mention the amount of times lab techs have taken blood samples, cat scans, MRIs, given radiation, physical exams and more.  So when the thought of all the bills started flooding my head, I had to cease stressing about it. I was not going to ignore them, but I also was not going to let them bury me in debt and bankruptcy.  Once again, I came up with a plan. I would pay all of the smaller bills, under $1000, immediately.  The rest I would make monthly payments on and just take it one bill at a time.  

I can see how people could just let it all pile up and live under a heap of denial, dreaming that it will all go away.  But, like with cancer, that dream leads to nowhere. See, the hospital won't turn you over to a collection agency if you're showing that you have intent of paying, even it's a little every month, at least that's what I've read and have been told.  So when the bills come in, at least two or three a day (once it was eight) I simply put them in a corner on the counter, in a sense letting them pile up. At the end of the month, I go through each one and enter them into a spreadsheet where I've listed each and every doctor's appointment, blood draw, chemo and radiation treatment.  You see, over time I've figured out the medical industry's problem.  The different departments even at the same hospital don't communicate to one another.  I get a bill for a single blood draw, sometimes months after it occurred.  And then once I get the first, I may get a second notice on that same blood draw less than two weeks later, which only amounts to many duplications.  Of course, it'd be much easier if they would just send you monthly statement, but then again we're talking about the medical industry.

I could understand if I were traveling all over New York being seen by specialists from several different hospitals or centers, but I'm not. My breast surgeon, reconstruction surgeon and two oncologists are all a part of the same hospital and even have offices in the same building.  One day I was able to schedule appointments with all four within three hours, a feat they even thought was a bit absurd.

I know I'm probably simplifying the issue to extreme and that there's most likely a good reason for the massive paperwork, duplication of invoices, statements coming more than four months after a visit and more.  So my advice to stay ahead of the game?  Not sure if it's advice but it's what I've been doing so far that seems to be helping. With one surgery left to go, here's where I stand:

- keep a record, whether electronic or manual, of each and every visit and what happens

- when going through the mountain of bills, enter each one corresponding to that visit.

- you'll soon start to see, as I did, duplicates and how easy it can be to write a $35 check four times for one blood draw

- I made columns for the cost before insurance, what insurance paid, what I owe, how much I paid and when and how (i.e. debit or check number)

- and again, pay the lower amount bills first so that you only have a couple of bills hanging I've your head and not many

Where do we stand now, even with one surgery remaining plus follow-ups?  Well, take a deep breath.  My bills prior to insurance have surpassed the quarter million mark.  $263,764 to be exact.  My portion of that?  About $42k, or 20%.  Now, here's the real kicker.  The medical industry doesn't take notice that my tests, diagnosis, surgery, treatments, and follow-ups have lasted no more than twelve months.  That first appointment in which I went to my gynecologist's substitute to confirm that the lump I felt was in fact something to be concerned about was on August 1, 2011.  However, the medical industry doesn't look at it that way.  They see that this course in my life has spanned two fiscal years.  So the maximum deductible was reached in 2011 with my mammograms, biopsies, MRIs, body scans, double mastectomy, and four chemotherapy treatments, which means that insurance sees it spanning two years.  With two chemotherapy treatments, 30 radiation treatments, a pet scan, blood tests, and my exchange surgery in 2012, my out of pocket is even more. 

What would have happened if I had simply waited 5 months to start all of this on January 1st?  I'm sure I'd be paying a lot less.  But then again who knows how fast the cancer could have spread since it was so aggressive.  So even though our savings are erased, retirement gone and we had to put off saving for the girls' education, the end result is I am in fact cancer free.  And yes, there are others out there that have it much worse than I do, not just regarding cancer but in life in general.  My mantra has been, "At least I don't have to walk three miles a day for clean water!"  And there is no comparing one's cancer to another.  We are all different so no matter the diagnosis, how our bodies react to treatment isn't the same, and neither is how we deal with it.  All we can do is the best we can, the best we know how.  After that, well.....let the medical industry figure it out.