Sunday, December 30, 2012

MERRY CANCERLESS & HAPPY NEW NIPPLES!


If you're not the sharpest tool in your shed, then I'll be blunt. I got nipples!  And this posting will be solely dedicated to the little headlights women have forever either flaunted or hidden from the rest of the world.

See, my mastectomy wasn't as traumatic as I originally thought it would be.  Since I had larger breasts and always yearned for a reduction, the idea of getting smaller breasts was actually somewhat becoming to me.  After the initial surgery, I had no qualms in showing friends my breasts, to give a better understanding of what a mastectomy actually looks like.  Not so much that I'm a mardi gras beads kinda gal, but since they were synthetic they no longer felt a part of me. Especially since they were the temporary tissue extenders and felt more like rocks, and that at any time if they would be taken way I wouldn't feel a lick of difference.  However once I had the permanent implants in place, I started remembering what having real breasts felt like and would start to feel a bit nostalgic.  I no longer had to wear bras, the first time since the fifth grade!  I could wear nearly any outfit I wanted, and feel totally comfortable and at ease.

So when the time came to get my nipples, I started questioning. Why?  Why in the world do I need nipples?  It's not as if they would work, as in any breastfeeding function.  That is, if I can even have kids.  Without nipples, I need not worry about something falling out like a Tara Reid, or showing my 'tune in Tokyos' through a blouse.  I could, for the first time in life, not give a care in the world as to how my breasts looked in any outfit.  But then there's my husband.  For the past 14 months he's soldiered through all things related to breast cancer - doctor appointments, scans, tests, surgery, follow ups, chemotherapy, radiation, more scans, more tests, and another surgery.  The least I can do for the man that stood by me throughout it all was give him a couple of nipples, right?  Rather than he look at my artificial tatas with their 'T' shaped scars, it may be a bit more appealing if they actually looked a little more, well .....real.  So when I return to my doctor, I'm doing it for Graham.  Or so I thought.

My reconstruction surgeon, a genius thus far, talked me through the entire in- office procedure two weeks beforehand. That's right, they manufacture the nipples right there in the office.  No hospital necessary!  Dr. Samson always marveled at my skin's ability to heal well when it came to scars.  Even before my mastectomy, when looking at my c-section scar, or what's left of it, he said, 'oh yeah, you'll be just fine.'  Ever since then, I knew I was in good hands.  Albeit, it's taken four years for my c-section scar to get to where it is today, barely noticeable.  But when you have kids, and look at how fast four years have gone by, it seems like a piece of cake.

I forget that I made the appointment during one of Graham's classes and during Becca's matinee so I text the next two friends who would appreciate new nipples - Amber, a newly certified dula, and Elizabeth, a documentary filmmaker.  Both leap at the opportunity.  Waiting in the doctor's reception area is a bit like the kid in a candy store feeling - anxious, excited, a bit nervous.  Neither can go in with me during the procedure for fear that they would pass out.  Not their fear of course but Dr. Samson and his assistant's, Sam.  But, immediately following, my support team can join me.  I go in, undress and wait for Sam.  She takes photos of me each and every time to use in their catalog to show other patients the progress of procedures.  When done, I jump onto the examining table and wait for Dr. Samson.  He comes in, and draws on the areas that will soon become my nipples.  With the two of them examining my breasts, conversing back and forth about the exact location, they agree that the left nipple should be only slightly higher than the right in order to give the perception that they're even. That's right, after all of this my breasts still aren't exactly perfect.  Radiation on the right side makes the skin tighter which makes the breast sit higher, not that the left is sagging by any means. But with the nipples, oh boy, not even I will be able to tell after looking long and hard in the mirror.

Samson leaves, while I hop back onto the table in order for Sam to inject the local anesthesia.  This is always the most painful part.  Little deep needle injections, puncturing in a circular formation surrounding the areas on both breasts in which they'll cut the skin.  The first few stabs are cringing, but as she continues the breast becomes numb and she repeats on the other.  Minutes later, the doc re-enters and they begin.  They slice the top horizontal line of my T-shaped scar, and a small portion of the vertical, turn the skin up into a triangle and suture a nipple together.  I only feel a tug here and a pull there, no pain or pinch to speak of.  It's the first time I'm really able to chat with the two of them, which is a bit odd at the time but it is relaxing considering all I need to do to watch them slice and suture me is lift my head and look down.  I do twice just to say that I did.  Yep, those are my breasts and those are scalpels ....and I slowly lay my head back down.  As they predicted, an hour later I'm done.  The doctor leaves as Sam finishes up, and for the first real time I get a good look at my nipples.  They are HUGE!  Sam quickly says, 'They will get smaller and when it's time for the tattoo it's easier for us to make the adjustment for smaller than it is to make them larger.'  Wow, this is quite a change.  My two spectators enter.  One quickly grabs the camera, and the other can say nothing but, 'Oh my god, they look so good!'  We all chat and joke while Sam cleans me up.  A bit reluctantly she agrees to allow Elizabeth to return with camera in tow for the nipple and areola tattooing in 6-8 weeks.  

The three of us leave.  I have some Christmas shopping to finish up, and my two amigas are laughing at the fact that I'm minutes out of the doctor office and already on the run.  But I'm fine, really.  My breasts feel a bit numb, but other than that I'm completely fine.  I dodge through the madness of Hell's Kitchen and then Times Square, all the whole protecting my new additions, making sure no one bumps into me or accidentally elbows me.  I get on the subway to pick up the twins, and suddenly feel the urge to whisper my secret to everyone on the train.  'Guess what?  I got new nipples today.'  Then life continues as normal.

Once I get the girls to bed later that night, I get another good look.  Wow, they do look good Amber Ford.  I mean, they have stitches which will take several weeks to dissolve, and there are the suture strips on the horizontal T now separated by a nipple!  And they are a bit big for the moment, but yes, they do in fact look good!  And what I  didn't expect to happens, does in fact happen.  I start to feel as if I got them for myself, sorry Graham.  Maybe it's the sense of feeling like a woman, or the idea of finally having breasts that look even, or the realization that I'm steps away from looking and feeling normal once again.

For days afterwards, I show anyone I can - associates at work, moms at the neighborhood holiday party, friends at a cabaret, the host of a private gathering, more friends, more associates, more moms.  I have to start to restrain myself for fear of starting rumors that I'm the mom that lets people look down her blouse.  Several weeks have gone by, and if anything, I've felt that I've appeared colder than usual.  Because I hate stitches, I started to pull and cut what was there which caused some bleeding.  So I bandaged them up for over a week, and now?  Well, I can go into the new year proudly cancerless and with new nipples.  And who knows, maybe I'll get them and areolas tattooed by Valentine's Day.  A girl, and a guy, can only hope!

Thursday, November 15, 2012

MORE KIDS vs. NO MORE KIDS

I was never that woman who felt that she wasn't complete until she had kids.  I mean I always wanted kids, a couple, ok several maybe.  But you know what I mean.  Don't get me wrong, when I found out I was pregnant, I was all on top being a mom.  And a mom of twins no less.  Well, you can just imagine what this did for my multi-tasking, organizing efficient, micro-managing self.  But I knew from the moment my GYN said, "Well, this is interesting," that I would return to work after my three months of maternity leave.  I know what some of you are thinking.  I worked at home during my maternity leave - negotiating contracts, writing and signing checks, updating budgets - all while handling twin newborns, and sometimes while double breastfeeding.  Seriously. 
 
So before chemo started, when my medical oncologist asked me if I wanted to freeze any of my eggs (since a major side effect of chemotherapy is the onset of pre-menopause and infertility), Graham and I thought about it for a mere minute and opted not to. We did discuss it before we entered the doctor's office, and had decided that we have two beautiful little girls. If for some reason we did want more, we thought, 'There are lots of kids who need homes. We could have a kid in so many ways. Why burden ourselves with just one?' The oncologist made the notation in my folder, as if it was a requirement.  I mean, she was the one that made a couple of snafoos.  I'm sure there's been a lawsuit somewhere, at sometime, in which a woman wasn't told that the Red Devil poison would make her sterile, and thus could not fulfill her life long dream.  Ever.
 
I stopped having my period prior to my third of six treatments (about a month and a half), and immediately the hot flashes started. I was thankful to have a bald head, since it emanated so much heat I literally felt I could fry an egg on it. Over time, I appreciated not having to worry about 'that time of the month,' but could be found at home, the office, the subway dripping down to a mere tank top and yoga shorts no matter the negative degrees outside - all in the blink of eye. And with another blink? I'd be fully clothed again.
As I ended chemotherapy and went through the six weeks of radiation, I grew accustomed to my new normal.  No menstrual cycle, hot flashes that felt as if everyone had an inner bipolar thermostat, and my hair started to come in.  But right when you feel you've figured it all out, it turns upside down.  Once I completed radiation, I went back onto the daily dose of Tamoxifen, the estrogen blocker. It's known that estrogen is an inhibitor of cancer growth, another curse of being a woman, as if we asked for it - yet again. The side effects of this hormone therapy are, as similar to the chemo, hot flashes and onset of pre-menopause - hence, infertility.
 
But over the course of a couple of months, I started to realize I wasn't having any more hot flashes, as if I actually had to try to remember when I last had one.  Was that it? Was that my menopause? Is that all it took?   When I went in for check ups, each doctor (remember, there are four of them) over and over again showed a glimpse of surprise when I said 'no' to the question of hot flash side effects. (I'd also say no to any achiness, cramping, mood swings, although who was I to say anything about that last one.)  'Is this normal?' I'd ask.  'Everyone's different,' they would respond with a tinge of bewilderment. Then again, what is normal in the midst of all of this madness?
Then, on august 7th, exactly eight months after I had my last cycle, it returned. Not much to get excited about, especially the cramping.  I mean, if you had to choose, which would it be?  Cramping or having to deal with tampons, pads, panty liners, etc.  You see, when my period returned after breastfeeding, it was pretty much insanity.  Like it was on the schizo cycle.  And the same happened now.  Like clockwork, I had my period for the next two months.  I thought, wow, maybe I'm that lucky woman who is spared.  Maybe, I can in fact have more kids! 
 
I return for my medical oncologist follow-up, which is every three months for the next two years.  I get weighed, have temperature & blood pressure checked, and wait for the doctor.  As always, the mildly obnoxious assistant comes in first, and I amuse her as I can so that I get in front of the doctor as fast as I can.  Done.  She leaves to get the doc, I remove my shirt, put the robe on, and mount that butcher paper covered table.  The oncologist, with her assistant in tow, enters, and examines me.  As I tell her the lack of side effects, and the good news that my period returned, there's no confetti.  No noise makers, balloons, or fireworks.  In fact, she goes on to mention how she might recommend an additional estrogen blocker via a monthly injection, as is the norm in the UK.  You see, being so young, with so much cancer, so many lymph nodes affected, apparently, the doctors are a bit worried for the cancer returning.  So blocking as much estrogen as possible that could further that along the better.  I take a pause.
 
'So I can't have anymore kids?' Now at this moment, from the corner of my eye, the mildly obnoxious assistant (who I might as well call MOA from now on) emphatically shakes her head 'no.' I quickly turn to her without hesitation.  'That is not acceptable.  That does not help a patient.'  She's stunned, as she should be.  I mean, no matter what, a patient doesn't need the opinion of a doctor.  One needs the information, all of it.  Then, you can make whatever decision is best for you.  My oncologist calmly looks at me and says, 'I recommend that you stay on the Tamoxifen for at least two years before considering to go off it and try to have anymore children.  Look at your options then.  If you want to have any kids again, you shouldn't take the additional estrogen injection.  You had alot of cancerous lymph nodes, and advanced tumors in your breast, all at a young age.  You have two beautiful children, and should be there for them.'  I politely thanked her, and wanted them to leave the room as soon as possible.  She continued to tell me that if I wanted to have a PET scan once a year or two years, she'd authorize it for me in order for me to officially feel being 'cancer free.'  We extreme pleasantries, they left and I dressed as fast as I could.  I still had to go to the Blood Draw room, to get my blood tested for varying levels in my liver and iron, signs that would indicate the return of cancer.  Then I left.
 
You never know quite what you want, until you can't have it.  Right?  I know that I should be thankful, and I am.  It doesn't help that Penelope keeps talking about wanting a sibling, twin boys in fact, one for both she and her sister.  I'm trying not to hold onto baby things, as I had done before.  Hurricane Sandy helped with that.  As for my period, it hasn't returned this month.  It's probably for the best.  I mean, what's the purpose of it, if it can't give you anything in return? 
 

Wednesday, October 10, 2012

BRING YOUR ADVOCATE

Now that I have a little more time on my hands, I'm going through some older blog postings that I never published.  This one should have been the first on my list.  It isn't just for grown ups.  I found myself as the advocate when Sophia when through her initial complex febrile seizures at the age of 2 1/2.  They nearly discharged us from the ER, before she had a second seizure (stopped breathing) and then third seizure (cleared CAT scans).  The next day in the pediatric neurology unit, with 30 wires stuck to her head and on EKG all night (all clear, no signs of epilepsy), they nearly discharged her again, until I forced the doctor to look at her motor skills.  She couldn't grab things out of my hands, sit up on her own, and since she was imprisoned in a caged crib no one realized that she could no longer stand up.  It took her three more days to learn how to walk again.  As a two year old, she couldn't voice her needs, say what was wrong, or even comprehend what was happening.  I, as her mother and advocate, had to speak for her.  Little did I realize, exactly one year later, I would need an advocate to speak for me.  I wrote this during my third round of chemo, in December 2011.  As I'm approaching the one year mark of starting my chemo treatment, I still to this day don't think I would have gotten through it had it not been for my advocate.......

Along with the adage, you hear what you want to hear, your advocate is there to fill in the blanks, and also to be your back up. For me it is Graham, and there couldn't be anyone better. As much as you think that I fight for myself, Graham is my warrior right alongside me, during the entire battle. He is there to ask questions, ones that we prepare but I somehow can't get past my lips. He is there to keep me present. There to hear things, phrases, terms, orders of procedures. There to understand the surgery, the pain, the healing. There for me, because even though I could do it if I had to, no should go through this alone.

It was most evident when my oncologist set my chemo start date, and gave me my prescriptions for anti-nausea and codeine for pain. Imagine, you are preparing your mind and body as best as you know how a full week before you have poison drip and injected into your system over the course of several hours. Not something you're necessarily looking forward to, but definitely something that you're building up to. When the day arrives, the oncologist, with her assistant nearby, says, "Did you take your steroids yesterday and this morning?" Um, what? "You didn't give me any steroids," I reply. "Of course I gave you steroids," she answers, actually starting to make me feel as if I had made the error. I start to second guess myself. Did she give me a prescription for steroids and I forgot to get it filled, pick it up, didn't take them? But before I could utter another word, there was Graham. "No, not once did you ever mention steroids, nor did you provide a prescription for steroids." She was caught. And before she could have a chance to turn me away to delay the start of the poison drip, he adds, "You can't turn her away today." Yeah, that's right! "I have nothing to do all day so take as long as you need to figure it out." Now in hindsight, I probably should have waited, after hearing horror stories of the effect that that the one chemo drug has on people while in the chair (burning of the skin, severe spinal pain and possible permanent damage, and more) that the steroids are supposed to protect you from. Then again, it's probably better that I didn't know. Mind over body is an incredible force, especially when you have your advocate standing beside you along the way.
And there are just so many other things that happen throughout all of this. Having your advocate there with you helps you keep on track. Not only is Graham my fact checker with the doctors, but he is also my coach, pushing me along the way.   And by pushing, I mean telling me to get my ass up and stretch my body.  He makes sure I'm on top of my medicines, appointments, doing my necessary exercises. Tough love isn't for everyone, but he definitely knows it's exactly what I need to stay ahead of this.  He is what makes me able to get through all of this. I knew before that he was my best friend, my husband, but never advocate. Another checked box next to the mountain man that I love with all my heart.  Seventeen years together and counting.....
 
 

Friday, September 7, 2012

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.

Wednesday, August 29, 2012

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. 

Friday, August 17, 2012

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!

Friday, August 10, 2012

Check out this blog.

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

Friday, August 3, 2012

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.

Thursday, August 2, 2012

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.

Wednesday, July 18, 2012

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.

Tuesday, April 24, 2012

DONE WITH TREATMENT, now what?

(I wrote this mid April, when I completed treatment, but am only now getting to post it.  I've back dated the post so it fits within the chronological order of the blog.)

It's  one week.   The week after I have completed radiation, in which someone asks, 'are you done with treatment?' I reply yes. They look back at me with such elation, 'yay!  Congrats!' I force a smile each and every time and say thanks.  I sometimes even pump my arms in the air in confidence in case they don't buy my smile as genuine.  It gets harder as each additional person congratulates me.  But no matter what, I can't help the loneliness I feel inside.  I mean, I know I'm not alone. I've got an amazing partner, incredible friends, unconditional loving family, and co-workers who have my back.  But for this week after I have ended treatment, I feel more depressed than I ever have in my entire life, including when I found out that I had cancer.  Ridiculous, right?  And then feeling like it is ridiculous probably makes me feel more depressed.  I had tried so hard throughout all of treatment to stay out of my head.  I'd allow myself time to grieve, and feel whatever emotions I had, but I'd force myself to jump right back into my routine.  Only now that treatment is over, there is no more routine.  No activity that actually says I'm taking care of this cancer thing right now.  So if I'm not doing anything to rid my body, what am I doing exactly? Just sitting and waiting for my body to heal.  And even then, what?  

My best friend, who happens to be a psychotherapist, says, 'In my experience, people are unable to feel when they have to focus on surviving. It's once their body determines that they are safe that they start to get all the feelings attached to that experience.' Well that explains it ...sort of. It's the first time I feel true depression.  My body aches and feels as if I'm an eighty year old woman.  I sit for ten minutes and go to stand, but my hips and knees refuse to catch up.  So as my body is supposed to be healing it actually feels like its falling apart more now than ever before.  The only yoga I can take right now is filled with older women, and is, no offense to those there, but too geriatric for me.  I need something to kick me in the ass.  My gardening helps but still isn't enough.  

What I realized at the beginning of all of this, almost nine months ago, is that the waiting is worse than the actual cancer.  And now, both my mind and body know it. The doctors themselves even say they can't 100% for sure tell me that all of the chemo and radiation worked. It's all just 'insurance policies.' The only way for me to ensure that I come out of all of this cancer free is to demand a full body scan.  See, insurance companies don't think the possible percentage of cancer still being present is high enough to warrant the cost of a PET scan.  And the percentage of those that still have cancer is so low that it's actually cheaper to pay for more treatments later down the road (harsher, more intense, and most likely longer durations) for the few that still have cancer than for PET scans for the many that may have already been cured.  Therefore, the rely on these 'insurance policies' to take care of it for them.  Well, I'm sorry, but I didn't go through all of this to NOT make sure that it all worked.  But until then, I have to sit and be in my head, and try to figure out the best way to get through this depression while working and taking care of kids.  

(and now that I can look back on that week, it was such a glimpse. I remember vividly the loneliness and sorrow, and helplessness especially.  But, as with everything else in life, it passes.)

Tuesday, April 17, 2012

THE END OF RADIATION

It's overwhelming.  To see that you've gotten to the end of treatment, it's overwhelming.  There's a sense of accomplishment, and why not?  Mammograms, biopsies, scans, MRIs, exams, surgery, chemotherapy, radiation, and drugs.  All for what?  To be called cancer free.  To be called a cancer survivor.  A label I never thought in my wildest dreams that I'd be named.  You mean, it's not something you wish to be?  It's not a part of some fifth grade essay of what you want to be when grow up? It's definitely not something you can choose to have.  It's not contagious.  You can't prevent it by washing hands.  You can try to hold it off by not smoking , by eating well, or even by not using some plastics. But really?  There are people who never smoked a day in their life and die from lung cancer.  There are health nuts who eat only vitamins a, c and e, and still get colon cancer.  Even after I tested negative for the cancer gene (the one and only genetic test created for cancer), despite all of the cancer in my family (see blog post EVERYONE KNOWS CANCER), they actually tell me it's 'just dumb luck.' Well, you know what I say to that?  Dumb luck, you're fucking mean!  Isn't luck supposed to be a good thing? So if it's not a good thing don't call it luck at all.  I always hear the 'good' kind of cancer, and I tune out which is which because no matter which one it all sucks!


So to end the treatment process is simply overwhelming.  I'm done in the eyes of the medical industry, and everyone else for that matter.  But in the back of my mind, I always hear the whisper, 'for now.' I know there are survivors out there, some for decades, and some even close friends.  But the fear is there.  That once this is in you, it's in you, like some stagnant egg from alien waiting to ignite.  Ending treatment is supposed to feel like a good thing, but when the doctors can't give you a guarantee that you're cured, a part of you feels as if it was all for nothing.  I want to be told that I'm officially cancer free.   I want to be told that after the 5 hour bilateral mastectomy, four and a half months of chemotherapy, six weeks of radiation and now five years of pill popping, the professionals that I'm in debt to (literally, now reaching over $40k - the blog is coming called 'the costs of cancer,' don't you worry)... I want to be told that the professionals did their job.  And since they can't I don't feel I can call myself cancer free, or a cancer survivor.  It may seem trivial, but it's true.  I see the faces of those that fought and didn't make it.  I imagine what it was like for them to be told that the cancer came back. I specifically see my father's cousin. I met her once when I was very young, before the cancer. She was beautiful, fun and happy.  Like me, she had breast cancer at the age of 36.  Like me, she had two kids. Like me, she thought she was 'cancer free.'  Unfortunately, she was remission for five years before it came back with a vengeance.  After fighting for another five years, she died from breast and spinal cancer at the age of 46, ten years after she was first diagnosed.

I am grateful, don't get me wrong.  I have the most amazing husband, who is an incredible father to our two beautiful girls.  I have a family that will lay down their life for me.  I have friends near and far that would be at my beckoning call should I need anything.  I have a boss that doesn't ask any questions.  I have a job that I love and keeps me out of my head.  I have much more than most.  I know that.  I know that the energy I've put into fighting this shit has been worth it.  I just want to make sure that it's been enough, because if it's not, I'll keep going.  For as long as I have to, I'll keep going.  I'll keep going for all that I have and don't have.

Friday, April 13, 2012

NEARING THE FINISH LINE

I have 2 radiation treatments left and as I went in today for my 28th and saw women and men still with many remaining, I do feel grateful that I've gotten this far.  I actually had to wait a while, for before me was a woman starting her first.   I've seen several others on the street, around the hospital as I come and go and we smile and acknowledge one another as if we're a part of a secret club.  Before treatment, I probably would have never thought about how we could possibly be connected, but how can I not now?  


Over the weekend, my skin will have time to recover and heal before I come back for the final two.  I think I'll start making a list of all the things I'll want to do as soon as the skin heals.   I can take bathes again.  I can wear deodorant (stuff that actually works), wear lotions that smell, use my French bath wash.  I'll be able to let my girls climb all over me without worrying that they'll hurt me.  I'll be able to give hugs with my right side again, and not just awkwardly lean in with my left.  And as soon as the skin heals, I can wear normal clothes again.  I've ruined about 10 shirts because I've  worn them over and over. I can only wear soft shirts that don't rub up and irritate my armpit area, but can still be ruined by the vaseline type lotion that I have to apply now nearly four to five times a day. 


I didn't start to feel pain or any uncomfortable irritation until I had about5 treatments left. But it was enough.  Imagine a sunburn in your armpit.  And it's not like a normal sunburn, it's a weird darker, skin transformation that is hot to the touch.  I definitely can't wear any bags or straps over my shoulder.  Can't wear any tight clothing that will irritate the skin.  And since my mornings are spent at the hospital, I can't travel outside New York for work.  I'm a hostage to my own disease.  


But come Tuesday, it'll all be over.  I'll get back on tamoxifen, the estrogen blocker that shrinks tumors, and stay on that for the next five years.  I'll have follow-ups with each doctor in the next coming months.  I'll have a full pet scan, at my own demand, to ensure the cancer is gone.  Then I'll have my exchange surgery, sometime at the end of July or beginning of August.


The road of battle isn't over, but continues.  At least I can start getting back to normal, or at least what normal will become for me.  Much love to you all.

Wednesday, April 11, 2012

EVERYONE KNOWS CANCER

When  people ask how the girls are dealing with mommy having cancer, I simply say, 'Great,' which is true. They are getting through this, I feel, solely because they've been able to see that cancer isn't a death sentence, or 'DOOM' as they're learning from the Ewok movies.  The response is often, 'well, it's not.' My reply every time is that it IS for some.  I don't want my experience or what I say to demean anyone's story.  We are all different, unique individuals that unfortunately (and at the same time fortunately) travel through separate journeys in life.  Even though I may have the exact same disease as some, how our bodies react to treatment may not be the same.  This disease comes in MANY different forms.  It doesn't care if you're a woman or a man. It doesn't care if you're white, Hispanic or black.  It even doesn't care how old you are.

We have all had cancer in our lives, whether it be a family member, friend, co-worker, or self.  Tell me one person that doesn't know ANYONE who's had cancer and I'll give them the luckiest person in the world award.  And if I'm your first, I'd love to give you a bear hug and apologize for breaking your cancer virginity.  For everyone else, try listing all of the individuals in your life that have been affected by cancer.  When you come from a large family, it's inevitable that someone will have cancer.  For me, because of my gene testing, the list is long, and I'm able to go back to my 'great' relatives. How, after all of this, I still DON'T have a cancer gene, I may never know.  So I start with those that have passed away:
  • Joseph Macaluso (maternal grandfather) - 8 years remission from kidney cancer, died of kidney and colon cancer at age 83
  • Ada Brown (paternal grandmother) - died 49 from subdural hematoma while battling breast and lung cancer
  • Elvis Brown (paternal grandfather) - died at 62 from throat cancer
  • Rosemary (maternal great aunt) - died at 48 from ovarian cancer
  • Blanche (paternal great aunt) - died at 54 from breast cancer
  • Gertrude (paternal great aunt) - died at 58 from breast cancer 
  • Mom's first cousin- died mid 50's from throat cancer
  • Edith (paternal great aunt) - 35 years remission breast cancer, died of a heart attack
  • William (paternal great uncle) - died at 71 from mouth cancer
  • Billie Joe (paternal first cousin) - breast cancer at 36, remission until 41, died  at 46 from breast and spinal cancer
  • Anna (maternal great aunt) - 17 years remission breast cancer until 78, died of a bad heart
  • Mike Rokich (Husband's grandfather) - died 1999 of prostate cancer
Friends, co-workers and loved ones outside of family that have passed:
  • Michelle - college classmate, died in 2004 at the age of 29 of colon cancer
  • Edgar - childhood friend and high school classmate, died 2005 at age 29 of Lymphoma
  • John - high school friend, survived testicular and brain cancer, died 2007 at the age of 31 of lung cancer
  • Anne - Husband's co-worker, died Jan2012 of lung and brain cancer
  • Judy - dear friend, died Jan 2012 at age of 67 of ovarian cancer
  • Kelly - college accompanist, died March 2012 of Intestinal Cancer

On that somber note, you'd think that we'd feel completely powerless.  Then think about survivors you know:
  • Dolly (maternal great aunt) - 6 year survivor colon cancer, currently 90
  • Kathleen (mom's twin sister) - 13 year survivor breast cancer
  • Barbara (business associate) - 12 year survivor brain cancer
  • Steve (Husband's uncle) - 3 year survivor prostate cancer
  • Tiffany (college friend) - 16 year survivor ovarian cancer
  • Brianna (college friend) - 8 year survivor Metastatic Thyroid Cancer
  • Amanda (college friend) - 7 year survivor Stage IIB Hodgkin's Lymphoma (diagnosed while 34 weeks pregnant)
  • Grace (daughter of high school friends, 12 years old) - 6 year survivor of brain cancer
  • Anna (friend of the twins, 5 years old) - 3 year survivor of brain cancer


Now, think about those currently fighting:
  • I count myself - 36 years old
  • Joyce (father's sister-in-law) - breast cancer
  • Jamie (4th cousin, cuz in Louisiana you know them) - thyroid cancer
  • Brett (college mentor and advisor) - prostate cancer
  • David (business associate) - terminal blood cancer
  • Libby - 6 years old battling kidney cancer

And this is just what I remember.  I know there are others that I'm leaving off - a friend's mother, someone's sibling, and more.  To that, I send my deepest apologies.  It's a disease that affects everyone. You just never know in what capacity.  They could have survived, been a caretaker, seen a loved one die, or watch a child battle through.  So since I look like cancer, I'm more aware.  When I catch someone's glance, I have to force myself to smile.  I never know what cancer has done to them.  I know I'm getting through this, but I've seen dozens in the hospital struggling, wondering how many times they've been there before.  Wondering if I'll return. 

I go home each day, passing my neighbors, a Puerto Rican family that has lived with cancer for decades.  The youngest in the family is a bright fourteen year old girl with a beautiful smile.  I've seen her grow from a lively six year old into a young lady, all the while never knowing just how she has been affected by cancer until I was diagnosed.  She's seen her grandfather and uncle die from it. She's seen her grandmother, whom she lives with, go through two remissions.  Now, she's witnessing her aunt, who has gone through three remissions, die from it.  The aunt has had to move in with the family, and sleeps in the same room with her.  During the day she sees me living through it as if it's no big deal, and at night she witnesses her aunt painfully fading away because of it.


Then I hear of the kids.  Little Anna was 18 months old when she was diagnosed with brain cancer. But now looking at her, the spirited 5 year old that she is, you would never guess. Jennifer, Anna's mom, has become a dear friend.  Anna has to return to the hospital often for scans and follow-ups. Even though her treatment was at such a young age, she is starting to form memories of it all, seeing other kids living through their various diagnoses and treatments.  


And dear Libby, battling at this moment.  Six years old, 2 major surgeries in a week and months of treatment.  A six year old should be learning how to jump rope, scale the monkey bars or even get lost in a book, NOT develop a fear of life vs. death.  It's not fair.  I know all of the adages:  "What doesn't kill us, makes us stronger." "This too shall pass." "It could always be worse." In the end, it still simply sucks.  Sucks that this happens to anyone, let alone a child, in any capacity.  


So when there's nothing to say, when no words can express the confusion or anger, when all you want to do is just beat the crap out of something, we're still left with cancer.  We're still left with a disease that robs us of time, happiness, memories and loved ones, even as a survivor you're robbed of the energy spent fighting.  Coming out of it, there is only perspective.  You look at things differently. You make sure that at no point do you have any regrets.  And not that you may feel an Ewok DOOM, but that you make sure you've taken advantage of every opportunity before you.  Because in the end, yes, it could always be worse.  But wouldn't the saying be better received if it were "it could always be better." and it actually was?