Prepping My Twins

My husband and I always said that we would talk frankly to our girls.  That, despite the fact that some think kids must be protected, we armored ourselves with the mindset that the more they knew, the more they understood, the less likely they'd be scared or confused within any set of circumstances.  So when I found out I had cancer, we both looked at each other as if we were in a western duel waiting for the other to draw their weapon.  How do you talk two three olds about cancer? Well, you just blurt it out.  

We're at dinner, and after the two of us finish our meals and the girls are still working on theirs, we decide it's time.  "Girls," I say, "Mommy is sick." "Oh no, Mommy, are you ok?" asked the ever concerned Penelope.  "Well, I will be.  I found a bump on my breast and the doctors tell me that it's cancer." "What's cancer?" asks Sophia. "It's when a group of abnormal cells start to take over the space of good ones, and they continue to grow..." starts Graham.  I look at him as if to say, "Really, we're going to go into it like this?" Graham shrugs with the "how else do you describe it?" look.  By the time we turn back to try again, we've already lost their attention and the moment has passed, as they start talking about poop and boogers.  I find comfort in the fact that they're only three and can't quite grasp the concept of what is happening, that they can understand the simplest of terms which will take place but can't quite comprehend the full scale of what's at risk.

As I prepare for my surgery, the weeks leading up to it, I tell the girls a story, that I keep repeating as often as I can and definitely any time they ask.  ".....not sure how, and don't know when, but at some time there was a sickness that got into mommy's breast.  I felt a lump there that I knew shouldn't have been.  I went to the doctor where they took a picture of it. They told me I was right, that it shouldn't be there.  To make sure, they inserted a needle and pulled out a small piece to test it.  That's when they knew it was cancer and that I need to have it taken out immediately so that it doesn't spread to any other part of my body.  So in order to take it out they need to take off my breast, and because I don't want to ever have to go through any of this again, I told them to take the other as well. But don't worry, they're going to give me new boobies. However, after the surgery, you'll have to be very, VERY gentle with mommy.  I won't be able to do a lot of things that I normally do, so Grandma is going to visit to help out, and some of mommy's friends are going to cook dinners for us to make sure we have enough food.  I won't be able to pick you up.  You won't be able to sit on my lap.  I can't have you climb into bed with me.  Grandma will bathe you and brush your teeth.  But this will only be for a few weeks.  So a way for us to prepare for this is to make some changes now.  Instead of me picking you up to get onto the counter for teeth brushing, you can climb up on your own.  Instead of me leaning over the tub to wash, you can stand up.  And for rocking to sleep, let's see if it's comfortable to put a pillow between us."  Of course after the surgery, it was all about looking at my scars and telling them my boob story.  So I revise and repeat.  Over and over again, so much that they start to retell the story back to me and even draw pictures of my breasts.

The process is repeated all over again when chemo starts and for each and every treatment.  But this time we talk about how the medicine I take will make me very tired and very soar but only for a few days, and that most importantly it will make my hair fall out.  For the first treatment they do really well.  Before my second treatment, 3 weeks in, my hair drastically starts to fall out.  Graham and I are in the middle of technical rehearsals for a solo festival - 21 shows in 10 days.   My in-laws are kind enough to take the girls until Saturday.  It's Friday and opening night.  I'm in the shower washing my hair.  As I start to run my fingers through to rinse, my hair comes out in sheets in my hands.  I take a deep breathe, rinse off, dry and gently seal my hair to my head with the last of my gel.  I get through the work day, through the opening night, and at the party, for fun, show a couple of friends, who are in disbelief.  (apologies to the busboy at RESTAURANT NAME for the clump of hair under the table!)  Fast forward to the next afternoon, after I arrive home with the girls.  They don't believe me either, so even though I want to wait to shave it for Graham to be home and Elizabeth to videotape, I sit on the tub's edge and tell them to run their fingers through and pull gently.  They are in shock but more of amazement than fear.  And for some sick reason they're enjoying it - they are my children after all.   I have to make them stop or there won't be any left to shave!

The next morning, daddy's home.  It's blueberry pancakes, Penelope Pitstop, and cleaning up before Elizabeth arrives to videotape the shaving of the head.  Because she too doesn't believe me, I pull out a clump and within minutes she has the camera recording.  Best friend, Scotte arrives and as we set up in the bedroom, the girls are running around giddy, anxious to get the clippers to my scalp.  But after a couple of strokes they're bored and leave the rest for Scotte and I.  They come in and out of the room, getting quick visual updates, but all in all, they have no problem adjusting.  And that's how it's been ever since.  

For each treatment, we give them a couple of days warning and several reminders, so that when the change happens, they're not taken by surprise.  They may forget in simple moments, but they soon remember. They're told, "Sweetie, mommy can't do that. She just had chemotherapy." or "Mommy's tired right now.  Why don't  read you a story?" The biggest adaption for them is the fact that I can't be near them if they are sick, and boy were they ever sick!  Snotty noses, coughs, fevers.  If my body temperature would even near 100 degrees, I'd have to go straight to the emergency room.  But as a mom, I can't just sit back and watch.  So, very carefully I risk it.  We all wash hands, cover mouths (as much as you can make a 3 year old cover her mouth), don't drink after one another, don't share food, wash clothes often.  And in the end? The three of them sick 3-4 times each throughout the winter, and me? None.  

That doesn't mean that the girls don't try.  Occasionally, I'd hear, "I'm too tired. I had my chemotherapy today." Which I NEVER let slide, that is after all, my line.  But because the girls are so accustomed to talking about it, they also draw it.  I have plenty of pictures with BALD mommy, or family portraits with a BALD mommy.  And when explaining it to their teacher or school friends, they say without hesitation, "My mommy is bald because of the chemotherapy curing her cancer." As if it were just that simple, but to them it is, as it should be.  I see adults do a double take, and look at me with a bit of alarm. Several months after radiation, as my hair struggles to grow back, and hot flashes make it difficult to keep the skull cap on my head, I get more questions from area parents that 'heard' about my condition.

 

So now it's all about my radiation which actually has by little effect on them.  The only time it's an issue is in the morning.  There we days before any of this ordeal when I'd try to sneak out by 7:30, to go unheard, in order for them to sleep a little more and give daddy a little more rest.  And whenever I couldn't I'd delay for 15-30 minutes to spend a bit morning tie with my girls.  But when for 30 straight weekdays you absolutely can't be late, it's difficult.  I imagine it to folks who live in the suburbs and must catch that specific train into the city or the rest of their day will be forever screwed up.  Lesson? Don't live in the suburbs!  So when I'm minutes away from getting out the door, and I hear their bedroom door creak open, I sigh.  "Mommy, I want to get up and eat breakfast with you." "Penelope, I'm sorry but Mommy has to get to the hospital for radiation." "Not again.  I hate radiation" "Honey, we don't use that word. But you're right, I don't always like it either.  But I've only got 16 left to go!" But to her I might as well have said a thousand.  I quiet her down then talk her into eating an oatmeal bar, and wait for Daddy to wake up.

I know the girls have gotten through all of this remarkably well.  I know that I've put an image into their minds that cancer doesn't equal death, that when you are aware, take action and keep things in perspective, you have a chance doing  anything.  

HALFWAY THRU RADIATION

We're all creatures of habit. We often do things so many times that we blink and have no memory of what has lapsed.  It happens when we drive. It happens walking down the streets of New York. It happens throughout our every day of life.  So when you have to break out of that habit, it's a bit difficult.  You have to force yourself to create an internal reminder each and every time. For instance, normally I would take the subway to 50th street, exit the subway on the south side, walk downtown three blocks, greet the same bellhop in front of the Crowne Plaza, stop in at Starbucks and order from my same Barista, jaywalk across the street, greet our building's head of security, Ben, unlock my office's elevator floor, turn on the hallway lights, unlock the office door, and enter to finally start my work day at 8am.  I sometimes do this all without blinking.

 Now, for six weeks straight, instead of doing my usual routine, I have to force myself to get off at one stop earlier.  It takes me a while to figure out all of the 'quickest paths of execution' in order to minimize how much of my day this thing called radiation takes up. My 'regulars' are a little different.  The newspaper gal at the bottom of the 59th street escalator, the food truck guy  that has no idea that he's probably seen more cancer patients imaginable than anyone else outside of a hospital.  Then it's the rotating shift of security personnel at the hospital entrance that seem to nod me inside before I even get through the revolving doors, as if my baldness is beacon that can be seen from miles away.  I wait for the elevators as everyone else is going up. I wait for the elevator that goes down to Radiation Oncology.  I get stares, feelings of 'oh she's doing DOWN.'  Little do they know that there were days that I regretted going up, oh those days of chemotherapy.  I'd trade them in for 4 months of radiation in a heartbeat.  Of course , I say that now, less than halfway through my 30 treatments.  But, I digress.  I get off on the lower level, and enter the doors of what seems like a sanctuary.  Quiet rooms filled with massage chairs, silence, beautiful plants.  I say hello to the receptionist, as I make my way to the back nursing station and the women's locker rooms.  I say, 'Hi' to Roberta, the nurse on duty, and step into the women's waiting area, filled with a bathroom, water cooler, comfy chairs and four changing rooms, each with a locker, hooks and a stack of hospital gowns.  I turn on the light, as I'm almost always the first one there, choose a room, take off my jacket and shirt so that I'm naked from the waste up. I make sure my iPod is securely fastened to my waste and that the cord goes up and behind my neck to insert just my right ear piece.  I put on a gown, opened to the front, grab my purse and exit the room.  Sometimes I have to sit and wait a bit, which is when I work on email or writing or just play a no brains necessary game, waiting my turn to be radiated.  

But more times than not, Roberta tells me to go right in.  I pass a patient in waiting, let's call him Ed, an older than middle aged man, in his robe and socks, who's almost always sitting right outside the door waiting his turn.  He ever looks up at me, let alone meets my eyes.  I get the feeling each time I've seen him that he's had his fair share of cancer and would simply rather be anywhere else but where he is.  I go through the double doors that say 'DO NOT ENTER,' but for some reason I'm excused from this rule.  I greet my one or two radiation technicians present - either Arielina, Ryan, Mia, Charlie or Bob.  Before I go in, I'm supposed to confirm that my 'stats' are up on each of the four monitors.  I don't know my stats.  I've no idea what I'm looking at, so basically I just need to make sure that I see my name on each screen.  Yep, that's me.  I enter the radiation room, put my purse in the only chair, and wait as they finish setting up the 'bed.' (I use quotes because it's not a bed at all.  It's more like a stretcher that is just a board like a gurney.  No cushion except for the pillow that is placed under my knees to support my lower back, not even under my head.) They have to put each piece on the board into the same numbered slot to make sure that I'm in the exact spot each and every time.  My mold is placed at the top.  They try to provide some comfort by spreading a sheet over the entire area that my body will lie, but I later realize that it's more for their needs.  I hop up, lie back, place my head into the mold at the same angle (chin up and to the left, which is the reason I only put my earpiece into my right ear), and my right arm up, pit exposed, with my elbow pressed down into its slot. The gurney moves up and then back.  If I'm not perfect, it all takes a little longer.  I lie with as much dead weight and as still as possible as the techs adjust me ever so slightly.  Sometimes it's just a nudge, or even a millimeter, but other times it's pulling the sheet back and forth so they can guarantee that my tattoos line up in the exact spot every day.  We chat, small talk - how was your weekend, how are the twins, etc.  My radiation techs know more about what's going on in my day to day life right now than some friends.  

Once I'm set, the tech(s) leave the room and the machine moves around me.  It's not a tunnel like an MRI.  I literally lie there as the overhead piece moves around me.  I never got a full idea of what it looked like until I video taped myself the other morning.  There's a laser beam on the wall to each side of me, one on the wall in the direction of my feet and one on the ceiling - all about eight feet away.  Nothing touches me.  There is no smell.  I don't feel a thing.  All I hear is a buzz that lasts 10-20 seconds. Once it's done, the machine moves to its next position.  At its position closest to my head, I can see the cross laser beams on one of my tattoos in the glass reflection.  I can see the monitor that shows numbers that have to do with my exact placement, the movement of the machine, and the length of the radiation timer.  My mind always wanders halfway through, and I lose myself in my iPod.  Before I know it, the machine moves back to its starting place, and the bed begins to move down and out as the tech enters the room again to let me know, 'all done!' On good days, I'm out within 10 minutes.  Bad days, more like 20.  

Every Monday, I have to be examined by the radiation oncologist to make sure that I'm taking care of myself - skin care, breathing, stress, depression.  I can see how people grow tired of this.  It's not really the radiation that takes long.  It's the getting to and from the hospital.  It's the prepping, it's the patience of getting into the exact same position.  You can't move.  One move, and it has to start all over.  Thank goodness I'm at the beginning of the day, as to not be held up by a back log of patients.  The longest wait time was because of an older Hispanic woman, who was obviously having a difficult time coming to terms with having radiation, and Arielina was talking her through it.  Or the new woman that is a police officer that goes in before me.  Or the business woman who has taken up doing crossword puzzles as she waits for me to be done.  

When I'm done, I have a pleasant 15 minute walk back to my office, as if I've taken up a new form of exercise.  I'm less than halfway through my treatment and doing pretty well as long as I stay lathered up.  I get to my office before anyone else has arrived, and have time to apply my lotion to keep the skin protected - chest, armpit, down the side, under the breast, and then the breast itself.  The Aquaphor is extremely greasy, like Vaseline, so my chest emits a shiny, gleaming look which makes me want to wear a tshirt that says, 'Of course they're fake, the real ones tried to kill me.'  and then I go on with my day as if all is well.  I get home around 6pm after picking up the girls from preschool, get dinner on the table and reapply the lotion.  They often give me a double take before hugs these days to see if I'm greasy, but I'll squeeze them anyways.  And then we'll do exercises or stretches or just play.  Even though the redness and skin treatment is maintained, there is surface browning, meaning my right underam is obviously darker than my left.  But it's beneath the surface that I have to be more concerned about.  My right side has gone through traumatic events in the past 8 months - mammograms, biopsies, surgery which removed a part of it's healing system, chemotherapy, and now radiation.  There is deep tissue damage, and it continues to be damaged.  I must stretch my right arm constantly.  There is tightness, soreness, tingling, stinging, and numbness.  This may continue for years.  Another habit that I'll live through without blinking.  

As for my hair, it's starting to come back, but in splotches and as a fuzz.  I just shaved for the last time so that I don't look like I'm actually pulling my hair out, hoping it will all grow in simultaneously.  But we'll see if I'll be the girl with the cute pixie cut or if it decides to curl up and give me a little mini Afro for a while.  Who knows?  If it turns it too bad,  maybe I'll continue to shave it over the summer in order to help subside these hot flashes as they continue to come and go faster and quicker than ever.

PREPPING for RADIATION

For days after my consultation with Dr. Evans, my Radiation Oncologist, I felt a bit euphoric. I can see the end in sight. I just have to take it step by step. I had to get through one more chemo treatment, one more weekend of feeling like crap, then it's onto the burning of my skin for six weeks straight. How hard could that be? I'm sure it won't be that bad, as long as I abide by everything they tell me. No fragrant bath washes, lotions or deodorants - now is that all over my body or just the radiated area? No hot baths or showers - thank goodness winter is almost over. (Screw that groundhog!) Keep the area very well lubricated - lotion up three times a day. Ok, that one will be hard. I'll have to be extremely dubious about that one. Stay hydrated (otherwise only drink alcohol in moderation). So, I'll have that glass of wine every other night then. Get lots of rest - ok so one out of five ain't so bad, right?

Before I start radiation, I have to have a scan so that they can get a detailed look at the areas in which they'll concentrate. I go in, and see the various waiting areas for folks' to twiddle their thumbs depending on where they are in the process. I'm directed to the one with two massage chairs and three computers which seems like it should be labeled, 'you're going to be here a while so you might as well enjoy yourself.' A woman is seated, mumbling about her daughter never putting things back where they belong, namely a pen. Hoping that it will quiet her down, I give her the spare I have in my purse. Unfortunately, this gets her going even more. Trying to stay calm, I tone her out, smile and concentrate on deep breathing. The technician, Charles, comes to the rescue moments later.

I'm led to a changing/waiting area, where I disrobe from the waist up, get into a gown, open to the front, and then Charles leads me to the scanning room which looks very much like all of the other cat scan rooms I've been to before. You've seen one, you've seen them all! I sit in the chair as he explains what's going to happen. I hop onto the 'bed', and lie back onto the blue recycle bag like plastic. Charles makes sure that it fits appropriately around me. He then takes the bag from under me and places it on top of the counter. He opens two plastic bottles and pours one into the other, seals it and shakes it furiously. He lifts the bottom of the plastic open and pours the new mixture inside, while spreading it around. I lift up so that he can place the plastic underneath me. I lie back. WOW! It's warm! Charles starts taping the plastic up around me. I raise my right arm in order to expose my armpit, and move my head slightly to the left. As the liquid cools inside of the bag, it'll turn to a hard styrofoam, making a mold of my torso. This is what I will lie on each and every time for radiation in order to ensure that I'm in the exact same position for each of the 30 treatments. As it warms, I start to relax, better get used to it now. The ceiling is decorated with a light box, replicating looking up at trees in the park and the clouds beyond, a beautiful cherry tree, as if I'm lying in Central Park and it's a beautiful spring day. Ah, the irony. I lie there for about 20 minutes. When all scans are done, Charles comes back with a sharpie and starts to draw what seems like targets on me, in 6 areas. He goes back behind the glass to confirm they're in the right spots, then comes back in to tattoo me. That's right, he takes what looks like a hand trigger and inks me in 6 spots, 6 little moles that will forever remind me of yet another part of this journey, as if I needed another reminder.

When he's done, I get up, get dressed and return to work, all inked up. At home, the girls get beyond the ink, but graham is constantly bothered by the targets, so for fun, I don't shower for 2 days. I get my kicks when I can!  Pictures soon to follow.

FINAL CHEMO TREATMENT

So I know I should have written this sooner, but life doesn't stop and neither could I.  My sixth and final chemo treatment came and went.  There were no bells, sirens, confetti or streamers.  There were no cakes, no candles, no toasts.  It was just as if it was any other ordinary day.  I left the hospital seeing familiar faces continue their fight, and new ones cautiously starting theirs. Graham's mom came to visit, and I couldn't have been more appreciative.  The sixth time through was the toughest, and why shouldn't it have been?  The girls both had high fevers and ear infections.  It was just a little harder to get up and move around, but I had to force myself.  I had to continue to eat 5 small meals a day, and stay on top of the medication - colace, steroids and nexium the morning and night the day before and the day of; colace, steroids, nexium and then the anti-nausea meds the day after; all except the steroids the day after that, and then just the colace and nexium until my bowel movements were normal and until I felt the heartburn wouldn't return.  One full week afterwards, and I felt I survived it.  

Now how do I feel?  Well, I still look like cancer.  Thank God I kept my eyelashes, because my eyebrows are gone, and my head is just a bit of fuzz.  The underside of my right arm where they removed the 24 lymph nodes still has a numbing, stinging sensation that they say may stay around for several years.  The fact that I have complete movement of my right arm still impresses all of the specialists that examine me.  However, I need to be cautious for the rest of my life of getting lymphodema, the swelling of the arm, when I fly on airplanes.  It happened on the flight to New Orleans over Christmas when the trip reached beyond three hours due to bad weather.  Even with an ace bandage wound tightly from my fingertips to my armpit, it swole up and was tender to touch.  Luckily, it went back to normal that night.  My sense of taste is still off, needing extreme salt or spices to even get a hint of flavor.  And unfortunately still, and have been throughout all of treatment, have been able to taste sweets.  How can I tell?  Because of the 10 pounds I gained over the past 5 months!  I promised Graham I wouldn't diet during chemo, but I must start and continue through radiation. Now that I have the breasts I've always yearned for, I must get my tummy back!  Hot flashes continue to come and go.  That's right, I have hit pre-menopause.  My last period was December 7th.  And in case you're wondering, no, there's no possible chance I'm pregnant. (Not that I'm not getting any, cause I am! Ok, not nearly as much as normal, but that IUD comes in handy.) I now understand why women chop their hair off during menopause.  The heat that is expelled from my body in a matter of seconds is insane.  My scalp is cold one minute and before the next needs oven mitts to handle.  I dress in layers while it's less than 30 degrees out only to constantly put my clothes on and off throughout the entire day.

This all has become my new 'normal' without any say in the matter.  Well, of course I have a say, but doing nothing really was never an option.  Imagining what would have happened to me had I never gotten that little lump checked out gets me choked up at the very idea. During my last seven months, I've known two women to die from cancer. One that I held dear, and fought for several years before dying with her loved ones near.  Another that I only met once, found out that she was terminal in the fall, and died months later.   And on the other hand, there are two other women that I know who have found out they have cancer as well and are beginning their fight.  One is a young mother that I grew up with, found out, is having surgery and so far is early enough that no further treatment may be required. And the other is my aunt, who went in for her annual mammogram, and was told there was something suspicious.  After biopsies proved positive for cancer, the doctors recommended a lumpectomy (surgery that removes the tumor) and 6 weeks of radiation.  But because of her two other debilitating diseases which require her to be on medication, which would have to cease until radiation is complete, she has opted for a double mastectomy and to just be done.  These two women now have a new 'normal,' a label of being able to say, 'I'm a cancer survivor.'

As I reached the third week after my final chemo treatment, the time which on schedule I would have gone in, gotten my vitals checked, waited my turn, sat in the recliner, and pulled my sleeve, confirmed my birthdate and then chemo number, and sat as they injected me with the Red Devil - I actually felt my body jonesing for the toxins, as disturbing as that sounds.  There were two days that I felt a bit of chemo withdrawal.  My muscles ceased up. My step was slow. My appetite was cautious.  I had to kick it into gear.  No you don't need that, I would tell myself.  But as I met with my Medical Oncologist, then Breast Surgeon, there's no guarantee that it's all completely gone, and definitely no guarantee that it won't ever return.  While the Oncologist and I agree to a pet scan three months after radiation to confirm 'cancer free' as much as possible, it truly comes back to just simply knowing your body.  After all of this, that's what I'm left with, and in a sense I'm fine with it. I trusted it before. There's no reason I can't go back to that logic now.  

Judging Others ....or NOT

I can be a sarcastic person.  I know some of you may scoff at that, as if 'tell us something we don't know.' And I'll start by saying I don't mean for this to sound cheesy, although I know how easily it can go there.  Being raised Catholic, I've always been taught not to judge others, which, as we all know, is much easier said than done.  When I was pregnant with twins, and hid it well under my heavy winter coat as long as I could, I often found myself wondering why people didn't automatically offer me a seat on the subway.  Thinking, 'Doesn't that young man not realize how difficult it is to carry a baby in the belly, let alone two?'

I'm saying all of this because now with cancer, and almost at the end of my treatment, I REALLY look like cancer.  The winter is warming, so I'm showing my bald head a bit more.  Going into my last session, my eyebrows are nearly gone, and my eyelashes are holding on by a thread.  I hid the cancer for as long as I could.  Not on purpose by any means, but with a winter hat on and having more energy than not throughout treatment, I'm lucky that I'm able mostly to continue my normal routine.  I know that this didn't happen to me because of something I did or didn't do.  I know that this is just a part of life.  But ever since I was told the news of 'there's something suspicious that we want to look at further,' before the biopsies, before I was told I actually had cancer, long before the double mastectomy and chemotherapy, I was aware.  And when I walked around in public, got on the subway, went to the grocery store, life's chores that each and every one of us must accomplish just to get through the day - I became aware of, 'I have no idea what that person is going through.'

The stereotype of New Yorkers is rude.  Even The Today Show's poll this past week, confirmed that America thinks New York is the rudest city in the country.  I often joke and tell people, 'It's not New Yorkers that are rude, but the people who come here.' But in fact, I can see how this myth can be seen as true.  With so many people in this city, from so many walks of life, performing such a variety of jobs, and then possibly going through a myriad of mental and physical troubles, how could one NOT hold a grudge?  And when you hold a grudge, no matter what it may be and you're around others, it can be conveyed as rude. 

So when I sat next to an African American man this morning on the subway, who refused to close his legs in order to make room for me to rest myself, I had to hold back my tongue.  I had to remind myself, 'I've no idea what he's going through right now.'  When I walk past a homeless person with the twins, I must always say, 'We don't know what happened to that person that made him get to this point in his life.'  When someone pushes past me on the sidewalk, I don't know if they're rushing off to make an appointment at the hospital.  Or when someone is in a daze and in my way, I don't know if they're thinking about the news they just received that will change their life forever.

With that, I leave you with the reminder that we simply don't know what's going on in a stranger's life.  And that as we all continue on this road with one another, we're all in it together.  As for that man on the subway, I forged my ass in.  He huffed and puffed a bit, because I didn't 'look' like I needed a seat.  But three stops later when an obviously pregnant woman got on the train, he offered his seat without hesitation and said to the woman, 'My wife is pregnant with twins, I understand.'  And now, so do I.

About RADIATION...

Graham described it best afterwards, "They're probably so used to seeing people beaten down by time they see them that it was most likely refreshing for them to meet with us." Needless to say, we had a good time. I know, a bit bizarre, right? But at this point, with only one chemo treatment remaining, I'm like a kid anxious for Christmas. I'm just giddy as can be, wanting more than anything for all of this to be over with.

Questions that we wanted to know from my newest specialist, Dr. Evans, Radiation Oncologist: was his preference to have my implant exchange before or after radiation treatment; how long would I undergo radiation; how many days a week; how would I feel; any other side effects; any long term side effects; how would I know that it all worked; and most importantly, can I drink some alcohol?

After I gave the Nurse Practicioner, Larry, a former flight attendant, all of my history, I dressed into a gown and waited for Dr. Evans. The South African doc was a fresh dose of realism. While he examined me, he commented on what great work my previous surgeons had done. He commended me on the full movement of my right arm, where I had 24 lymph nodes removed. I dressed and he came back in to share what he knew.

The first thing he said was that I am doing everything perfectly, but that doing chemotherapy and radiation is just an insurance policy against removing and getting rid of any cancer that is possibly still present. Doing radiation increases my chance of survival by another 15%. I knew the reason for doing chemotheraphy was because of the cancer found in my lymph nodes near my breast. Since they're a part of the lymphatic system that travels through the entire body, the cytotoxins of chemo treatment would kill those little microscopic cancer cells that may have started growing elsewhere that we don't yet know about. Radiation treatment, because on the direct spot, will kill any other cancer that is directly in lymph node area that we already know about.

There are three reasons why to get radiation. The first is if there is a tumor larger than 5cm. My largest was 2.5cm, although I'm sure all 15 combined would be more than 5cm, that doesn't quite count. The second is if there are at least 4 cancerous lymph nodes found. I had 8. And third is if the margin is less than 2.5cm. (The margin is the distance between the tumor and the cut of the surgeon.) Mine was 1.4cm. So with 2 out of 3, I get radiation.

I'll receive radiation in 3 locations: the actual area where the cancerous lymph nodes were found and the areas on either side, below along my right side, and above, above my right breast below my clavicle. If I were having radiation directly on any organ, I would have worse side effects (i.e. I'd have stomach pains and digestive problems for radiation on my abdomen for ovarian cancer, or migraines for radiation for brain cancer). But because I'm not receiving it directly on an organ, my side effects will be as minimal as they could be for radiation. The worst that can happen is that due to the radiation on the lymph nodes at the top of my chest, there might be permanent scarring at the top of my right lung. So we'll have to keep an eye on it. But luckily since it's on my right side, it won't affect my heart at all and they'll actually shield and isolate that part of my chest. The most common side effect of radiation is fatigue, and is mostly due to the anxiety, depression or lack of activity. He said my fatigue level will be similar to my level after my nadir time (the halfway point between chemo treatments). So, I anticipate no fatigue at all.

The exterior side effect will be the effects of the skin itself. Because radiation is directly applied to the skin, there will be skin and tissue damage. I can't use any fragrant lotions, body washes, bath solutions or even deoderant. I can't take any hot baths or showers, only mildly lukewarm. However, I'll have to apply the suggested lotions (the nurses will give me all the details on my next visit) two to three times a day to prevent any redness and possibly blistering. The skin could change a darker color around where the radiation occurs, but will go away within the year. Note, how my skin changes with a sun tan makes no difference as to what will happen due to radiation. The area could also have some swelling and iritation so the more that I do preventative care, the better. I'll have to keep track of lymphodema, the swelling of my arm and hand because of the removed lymph nodes. And the hair loss only occurs on the area radiated, which means we'll see the hair come back under my left pit before my right. That'll be fun!

Dr. Evans' preference is to have radiation before the implant exchange surgery. Most women want to do the exchange surgery as soon as possible, simply because it's a bit uncomfortable having the tissue extenders in. I concur that they do feel somewhat disconnected from my body, hardened, and tender at times. But if I take the time out to do the chemo, then having the radiation soon afterwards, helps my insurance policy that much more. Also, radiation do sometimes shift or alter the implant, and do tissue damage under the skin. Some women would then have to go in and have a third surgery. But doing the implant exchange surgery after radiation, the plast surgeon could correct any tissue damage at that time. So even though I'll have to wait 3 months, the answer is, let's wait and take care of the cancer now.

The suggested days of radiation are 28, so we're rounding to an even 30. I'll go in for a scan on 2/15, the week after my last chemo treatment, to get everything checked out and to get my temporary tattoos put on. These are markers that they place in order to ensure that each radiation treatment is on the exact spot each time. Then we'll start a couple of weeks afterwards. I'll go Monday through Friday, 5 days a week, for 6 weeks. The actual time of radiation is only 1-5 minutes, but the time to check in and get situated will be 30 minutes to an hour. Since the hospital is about a 30 minute walk from my office, I'm planning on biking to and from in order to eliminate the time taken out of my day.

So now, I see the light. By the end of April, I will have completed all my treatment. I can't tell you how happy this makes me. Graham and I left that office completely ecstatic. One more chemo, 30 days of radiation, and then life back to normal. It'll take about 3 months for all my hair to grow back (my eyebrows are finally disappearing, eyelashes are hanging on). And then a scan months afterwards to ensure that the cancer is all gone. The exchange surgery will be around August, one year after it all started.

But the blogging won't end there... I've still got to talk about:

The financial impact of cancer, even with insurance.
The food during chemotherapy.
The kindness of family and friends.
What cancer and chemo means to toddlers.
and much more.

Love you all.
Laurie

PS - I can drink, but in moderation. So I'm also counting down the days to have that glass of wine, sangria and mojito, but not all at the same time!

Before Chemo #5

I hope this finds each and everyone of you back comfortably in your own realities after the holidays. As I prepare for Chemo#5 tomorrow, consume all of my meds (steroids, zantac, and cinnamin chai tea, thanks to Heather Foley), get as many chores and tasks done before I'm knocked on my ass yet again - there were others that lived horrible realities through the holidays that I'd like to take a moment to pay their respects. The holidays are the worst time for tragedies to happen.  Maybe because it's supposed to be such a happy time, one of joy, and giving.  We all heard of the house fire in CT or the family shooting in TX. There were people who passed away over the holidays. I lost a woman I called a dear friend, to cancer. She fought it for many years, lived with it, saw it come and go. But you would have never known it by looking at her, however I'm sure the ones closest to her experienced every minute of it. And that's not an easy battle to fight either. Another friend by association, found out she's terminal. And I have a work associate terminal with another. I say these things not to make you feel guilty for having a good time through the holidays. Hell, I did. We all deserve it. I say it mostly because it's things like this - tragedy, death, cancer - that make as look at our own lives, remind ourselves what's most important to us.

I couldn't go through any of this without all of the love and support. I don't say this to expect more (although I'm not one to deny anyone giving me a lil' love=). Cancer comes in all forms, and it effects people in a number of different ways. Besides me, I'm sure you know a number of people that have fought it, are fighting, survived, died, or has had to care for a loved one going through it. So when I hear folks say that I look great (which thanks by the way) or amazed that I ride my bike (which I've only done twice throughout all of this), what you're not seeing are the days when I'm laid up in bed, having chestpains, moving so slow I feel what it'll be like to be elderly, so tired that I can't even lift my head, and feeling aches throughout my whole body I've never felt my entire life.

With that, I hope to truly document, with words and photos, what it's like, for me that is. I'll go out an about each day. I have to. Physically because my body needs the fresh air and the movement. Mentally because my brain needs something more than TV and electronics. So I'll do it early in the day while I have the energy. I'll try to nap, but it just doesn't work and somehow I feel worse afterwards. I'll go to sleep around 9pm, wake up around 6am. Will either read or check emails or play games, waiting for my eyelids to get heavy once again. And then sleep until about 8 or 9am. So it'll be the time at home that I'll focus on.

I have appointments early on Thursday and Friday. On Thursday, I have my first pelvic exam with my GYN since all of this began. It's something I'll talk about once I actually what know is going on with my reproductive organs. One, I need to deal with the outcome first. Two, I thought it best to have has few emails as I can openly mention menstrual cycles, periods, discharge - oops, guess this one is one of the few. Then I'll go to work for a bit before I return to the hospital to receive my Neulasta Immunity Booster shot, which ironically may be the cause of the extreme soreness in my neck and shoulders for the several days afterwards. I've found it odd the last two times that the nurse was surprised when I said that I'll take it in my arm. Does one have something to do with the other? What if I take it in my ass? Will my hips, thighs and ass hurt? Which one will be better? May ask you heads or tails the day of, so stay tuned.

On Friday, I have a site visit to review the location for Japan Day @ Central Park (yes, it's here already, and will actually be on Mother's Day - stay tuned)!  So after we're done, I may just spend the rest of the morning while I have the energy roaming through the Park. Again, great to live in New York.

Off to take my steriod pills, zantac, and colace. Then get some shut eye before I prepare to conquer the Red Devil.

Love you all.
Laurie