Wednesday, March 28, 2012

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.

Thursday, March 8, 2012

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.

Wednesday, March 7, 2012

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.