The Road to the Unknown

In the parking lot, my hands are shaking as I press the key into the ignition. It's only a five minute trip to get home but I am unable to start my car. My phone is flipping over and over as I watch the screen appear and flip over again. I'm inhaling deeply as my right knee shakily taps the underside of the steering wheel. "Okay, you can do this". I startle myself into pressing the speed-dial #2...ringing turns to voice-mail...#3...same thing. I text these two, my older children...call me-important...two down, two to go. Speed-dial #5..."Hey babe." "Hi mom, what's up?" "The doctor finally called...I have cancer." "Oh, Mommy..." "It's okay, I'm fine." My mothering instincts kick in and I need to comfort. I ask if she will stay with me tonight and she agrees as I knew she would. At some point, my other two have called and now I wait for the youngest to come home from work. I tell my news for the fourth time and I can't believe the reaction. My baby, 17 years old, puts her arms around me and says, "Don't worry about this, you got this mommy. You taught me a long time ago that we girls can do anything. I'm not scared 'cause I know you'll be just fine." That was it; we never really talked about it seriously again. She was always there for me but until that day, I never knew that I had done that good of a job.

And so began the longest journey of my life; the darkest 14 days I have ever known.

I went to work and managed to get through the days as normally as possible, although I was making more jokes than usual, all at my own expense. My co-workers gave me the sympathy looks, the cards, stories of everyone they know who has cancer, even stories of people who have died from all the various types of this monster I'm carrying around in my bra.  At night I would throw myself what became known as my 'pity-parties', sitting on the porch with a cocktail and a cigarette. I drank and cried by myself, or laughed and carried on like a classic manic-depressive if I had anyone for company. I spent time and energy looking at my ‘damaged’ breast in the mirror and imagining the creatures lurking there, where I once depended on the functionality of my body to nourish my babies, I now viewed it as my enemy, a stranger I once knew well. The 'creatures' I imagined, looked like those nail fungus things on that creepy commercial.  I also became aware of the cancer center ads that seemed to have multiplied overnight since the day of my diagnosis. A typical 'party' would end with me drunk-dialing the 24 hour line and trapping the same poor lady with my incessant questions and need for the kind of comfort that only a trained counselor could provide. I was drowning and without a computer, this woman was my life vest. I imagine she was as relieved as I was when my appointment with my breast surgeon was over and I no longer needed her. I had been given my very own...............

 Nurse Navigator:

Duties and Responsibilities

• They work with a multidisciplinary team to develop and implement an up-to-date care plan

• They need to communicate with all members of the health care team on behalf of the patient

• They use clinical protocols to refer patients to the appropriate specialist for diagnosis or treatment

• They help patients and their families in obtaining referrals to a specific specialist

• They give emotional support, and counseling, related to the clinical situation

• They work with designated physicians to develop and maintain hospital protocols

• They are also directly involved with the development and enhancement processes with the aim to improve the clinical experience for referred patients or physicians

• They communicates with referring physician’s offices as required by the patient and physician

• They need to work with marketing and outreach departments to educate referring physicians and facilities on services

• This position requires advanced practice expertise to identify and implement improvement processes, and the ability to design, direct and implement health care plans

My Carol was my angel. She explained everything I needed to know about my upcoming appointment with Dr. F. She was patient while I wrote down everything she said, she made me smile and most importantly, she gave me confidence. I was beginning to believe what my youngest daughter said. I was going to be fine.

Waiting, Wondering, Wishing

As I was leaving the biopsy room I cannot remember anything I was told. I had the sinking sensation that the staff was being too serious. Even before a surgery I can cause an eruption of humor,if not, actual laughter. There was the time in pre-op when I was much heavier and the anesthesiologist was filling out my chart from across a room full of patients and staff. "Miss D...how much do you weigh?"  Stunned, I hesitated,"uh,one ninety two..." "Okay, and how tall are you?" "Six-nine", I answered with authority. 

See what I mean?

So this time there was no levity, even though I made a couple of half-hearted attempts. I do remember standing in the tiny dressing room and the surreal feeling I had when I peeled back the dressing from the side of my breast I could see without a mirror. I suppose I expected to see a circle when instead, there was a rectangular slit about a half inch long. I tried to imagine what the weapon would look like that could make such an opening in my body. And I was afraid.

What then, do you do after the biopsy? You wait and you wonder and you worry. And then you go back to your job and act like nothing happened, nothing is wrong, no big deal. About a week later the anxiety starts. When will the phone ring? Who will be the one to call? Will I get something in the mail? It was probably a good thing that I didn't have a computer back then. It's quite possible I may have Googled myself straight to the funny farm. 

Eighteen crazy days later...

There is no haze around this memory, this one is like it just happened. I have left my business for my hour of a sandwich in my car while I listen to Howard on Sirius. My daily mini vacation, anything to keep my mind off of 'it'. I hear my ring tone and glance down at the glow on the seat beside me. At first I see the time, it's 3:14; I still have 45 minutes left, and then I see the number. It's easy to remember every phone on the campus that houses the medical buildings where I've had babies, surgeries, tests; every one of them starts with 777. 

(Does your heart really 'skip a beat' or does it just feel that way?)

"Hi, Debbie, it's Adam". He is hesitant, begins by apologizing for this taking so long (I already know), apparently he was on vacation when the report was dropped in his 'pile' and it became buried somewhere on his desk. He sounded embarrassed (I know it's cancer) and we have a close relationship so I know he's sincere. "I'm really sorry to tell you this way, I hate this but I didn't want to make you wait any longer. I'm so sorry, you have cancer."

Every one of us 'cancer people' know where they were and what they were doing when they heard those words. If they are anything like me, they can hear them over and over and over any time they think about it.

"So, now what do I do?"

He went on to explain that he had already taken care of everything. I had an appointment to see the head of the department at the breast center, assured me she was the best and gave me my appointment day and time; apologized once again and wished me all the best. So with that, it was done.
I sat and stared at the steering wheel, then flipped down the visor and looked at my face in the mirror. Funny, I didn't look any different. Then I remember thinking, "You should be crying...why aren't you crying?" I even tried to make myself cry. I suppose it was a form of shock that I had never felt before, or maybe I was feeling relieved that what I knew would come, had finally arrived.
I waited until 3:58 and numbly wandered back into my studio. Thankfully, I was alone; no line of customers, all needing attention at the same time. I remember nothing about the rest of that work day, other than trying to figure out how, and in what order I would tell my children.

Two thousand eight hundred and eighty minutes

Two days. Two days are only forty-eight hours. Forty-eight hours are…whatever. The biopsy is scheduled for Friday. If I were on vacation in some tropical paradise, Friday would have come by now. But it doesn’t come. I wander through my work day, am pleasant to my guests, forget what I was just doing, find myself staring away at nothing (this used to be called day-dreaming). There’s nothing ‘dreamy’ about what’s going on inside my head right now. At night I wander from room to room, completely disinterested in the dust or the stack of papers or the socks on the floor. My loved ones have already assured me that I will be just fine. I appreciate their efforts but believe none of it, I’m convinced that I am dying. These thoughts are coming from a highly intelligent brain; the one person everyone else relies on for rational advice, the cool, sensible one in every situation… except this one. Bombarded by those commercials about people beating cancer and without a computer to connect me to Doctor Google, I called the number that promised answers 24/7. They were as wonderful and kind as the commercials promise. It was nice to talk to someone who seemed to understand, forget about the fact that the conversations were taking place between 1 and 3 in the morning.

Friday at last and I’m terrified. I have to go in to the same office where I had the mammogram and have zero idea as to what is going to happen. Logically, I understand the process.  bi·op·sy/ˈbīäpsē/Noun: An examination of tissue removed from a living body to discover the presence, cause, or extent of a disease. The presence or extent of a disease. I’m thinking, “Hey guys, I already know I have cancer, can’t we just call it a day and forget this? I forgot I have a dentist appointment and besides, I HATE flying and I want to get off this plane NOW!“

 By now I’m already in the gown and I’m sitting in the same seat I was in two days earlier. We are all still avoiding eye contact but this time I wonder which one of these women had cancer (like me). Oh crap, here she comes…”Miss DeMuh..Demaa”, “That’s me”, I put her out of her misery. She escorts me to the chamber. The table was completely out of one of the “Saw” movies; there is a wide oval hole in one end of it, the instruments of torture are stored beneath the table and I suddenly realize I am being readied to be put up on a lift! I am tempted to ask for balancing as well as the rotation, possibly an oil change as well. I am instructed to position myself so that my right breast is dangling through the hole. I shift and shift and realize the metal edge of the opening is smashing into my ribcage and it hurts like hell. Nurse Ratched explains that they need as much access to my breast as possible but they will give me a pad if that would help. DUH! The ‘pad’ was about the thickness of the “Quicker-Picker-Upper” towel. I am resigned to knowing this is going to hurt no matter what I do…OH WAIT! And once the doctor starts, I cannot move. As I entered the room, I was shown the mammogram and the little white  glitter-like specks that were scattered around in two different areas, which meant that she would be performing the procedure twice. Each one would take approximately 25 minutes.

Again, I start thinking I’m in a remake of “Saw”. Ladies and gentlemen, as the table rises,  let the tune-up begin! I see the doctor glide on her roller-stool underneath me. Speaking in what I suspect is a tone intended to be calming, she starts to explain every move she is making. Ok, it was better than silence. I realize that my breast has been grabbed by a robotic claw (I picture the claw machine game from which I have never received a single, crappy stuffed anything). The claw is grabbing, pinching, releasing and grabbing again; an effort to gain the best vantage point for a direct hit. I’m thinking this would be better if we get a teenager in here who has way more experience with an X-Box and robotics and remote control cars. Still the claw moves a tiny bit more. When it finds the sweet spot, the pinching becomes more like a squish and a downward pull (picture cow milking). When the needle is finally inserted, I know the true definition of excruciating. About an hour later it is over. I was asked to lay still until the doctor could go to the lab and make sure the samples were sufficient. Really? Seriously?

Finally up, light-headed, nauseous, I was given two round ice packs to stuff into my bra. They were supposed to help with the pain and swelling. I guess they did but they didn’t help much with the bleeding. Did I mention the movie “Saw”? Oh, excuse me for making this all about me!

Sorry if this grossed you out, it was pretty shitty for me too. Advice? If anyone asks me for one good piece of it before having this procedure, I would have to sum it up in three words:Xanax or Valium

Now the waiting begins…

How Could Something So Insignificant Save My Life?

It was 2008, June, hot and humid. Just another gray day, nothing special.  I don’t remember anything about the morning so it must have been a Wednesday, my only weekday off. I don’t even remember if I had plans but I must have because I realized at the last-minute that the pits needed a shave. Since I had already showered, I decided to belly up to the bathroom sink and do the impromptu business. As I began working on the right side, I noticed a strange shadow. My photographic training clicked in and I realized that this shadow looked like a phase of the moon, dark side away from the bathroom light. I dropped the razor into the sink and began to fondle my armpit.What I felt was a lump, perfectly round to the touch; bigger than a pea, maybe about the circumference of a dime. To me, it felt like a cantaloupe! What the hell? How was this possible? Why am I fifty-two and have never had a mammogram? All of those times I heard the commercials and thought, “I really need to do that”…WHY didn’t I do it?

So, now, I’m about as freaked out as a girl can get. What the hell do I do now?

Shaking, I call my GP’s office and tell the secretary my story. She puts me on hold. A thousand minutes later, someone picks up and I repeat the story that contains the word, “lump”. No more waiting, I’m asked if I can be there by 1:30. Of course.

I am escorted back to a cubicle of an exam room, asked to disrobe and to don the gown du jour. I do so nervously…Approximately four years later, a PA enters to take my BP and temperature, (WHY do they always do that?) I HAVE A FUCKING CANCER LUMP UNDER MY ARM! NOT A FEVER!   Eventually, there is  girl who looks about 16 years old in my room asking questions, and palpitating the planet in my armpit. She decides that I should go downstairs to the radiology office, go directly there; without passing GO and without collecting my $200. I do so without so much as a whimper.                                                                                              As I sign in, the girl at the desk asks if I have an appointment. “No”, I answer, (expecting the usual run-around), then mumble something about this, that and a lump. Hearing that, she decides there is an immediate opening. I wait for a nano-second and am ushered in to the inner waiting area where a sweet tech-girl shows me a curtained dressing room, the available gowns in shrink-wrap; all of which are sized XXL and XXXL (take your pick). She explains that I should deposit my belongings in a locker of my choice and keep the rubber bracelet key with me. I dutifully lock up my clothing and undies and wonder why I should keep them under lock and key. Now I wait... there are at least four other women in this little waiting area, TV blaring, not daring to make eye contact. I wonder if they are all here to find out if they have cancer, just as I am. I have no clue. One by one, they are summoned...one by one, they reappear. Looking at their expressions, I cannot tell. I believe they are all healthy and safe...for the moment.                                                                                                                         "Miss DeMateioughshgl?" Oops, that's me. I dutifully follow the executioner to the room where the dreaded mammogram awaits. I am freaked as hell. For those of you who have been there, enough said. For those of you who have not yet had the opportunity to undergo this test, let me explain...the woman who will be conducting the test goes through the explanation of the procedure in a monotone that lets you know she has done this thousands of times and can probably recite it in her sleep. You remove the gown from the designated side and she tells you to hold on to the handles on each side of the machine. At this point she reminds you to relax (yeah, right), that she will position you as she needs. Your head is turned as far away from the front as humanly possible, while this technician places your breast on the glass plate. Suddenly, another glass plate moves down and begins to press your bewildered breast into something that resembles a boob sandwich. (ouch!) For some reason, she can never get this positioning right on the first try and begins the pulling and squishing once more. Then the famous words,"you're going to feel some pressure now, and I'll need you to hold perfectly still." Really? I'm sure if I tried to pull away or God forbid, I faint from the pain, my breast would be ripped cleanly away from my body! Now she hops around to duck behind some bullet-proof glass shield and begins the scan. Next famous words,"now don't move, you're doing great!). AAAAHHHHHH!!!! Finally, the pressure releases and I'm afraid to move until she gives me permission. Whew, now we have to go through it on the other side. Fortunately, this process doesn't take longer than it did to explain it and honestly, I can be pretty dramatic. It's probably not that bad for everyone. Please don't avoid doing it because of my over-dramatic  description, anything is better than not finding cancer until it has grown to the point of necessitating further treatments like chemotherapy.                           So, after the attack, I am asked to return to the TV room and wait for  something... Eventually, another young girl summons me to an office-like room, (no machines, only a desk). I sit and am soon joined by a woman this time who announces that they will need to do an ultrasound.                                                                                                                                  Okey-dokey.                                                                                         

Mr. Lump

                                                                                                                                                                                                                                                                                                       To make a long story less long, after the ultrasound, I was told that I would need to see the other very young looking girl (why do they always seem to hire the youngest looking people they can find? Or maybe I'm just getting old) at the desk to have a biopsy scheduled. Which I did. Right after I nearly peed my pants. I was scared to death, but I knew I had cancer. Before I left the ‘office-room’ that day, the doctor-woman poked her head in and casually said, “Oh…by the way…that lump you felt? That was nothing,  just fat.”

Before I Knew Anything

Remember when you were a kid and thought about what you would be when you grew up in a hundred years or so? I can only speak for the girls, but we pretty much had everything figured out before middle school (we called it Jr. High School-sounded more mature). Not all of us dreamed of the fairy tale wedding and the knight on a horse, at least not me.

I remember standing in the corner of our back yard,  giggling with the girl who lived behind my next-door neighbor. Caddy-corner, we called it. We were discussing having families and children and at that moment I decided I was going to have four children. Although I knew that I would have to be married before that could physically happen (that’s what I thought, I had no reason to believe otherwise), I have no memory of picking out the future husband.Truthfully, Brandon Kimball would have been pretty high on the list but there was no list.

I did have a clump of notebook paper that had been ripped out of a spiral binder before Mr. Per invented his forations. I know that shredded paper that was left inside the spiral cage became ammo for the boys who blew the little balls into the classroom ceiling when the teacher wasn’t looking. What did girls do with it? I recall making teeny tiny accordion snakes or some rolled up spiral 3-D doodles. Whichever, we had to keep busy when the teacher wasn’t looking.

So, the notebook paper was folded into very uneven quarters and was very fuzzy from wear and tear. The top sheet in particular was where I kept my very important information back before the Word file and virtual folders were invented. I spent time on a daily basis listing names, or possible names for my four children. Each time I heard a new one I liked, it went into my collection for further review and consideration. The funny thing is that the only name I remembered from that day was the name of the girl with whom I was enjoying the giggle. Her name was Tara. That’s all, I don’t remember her last name. I repeated that name several times as I added it to the list and then I started what I thought was a very sophisticated way of working with a name I just wasn’t sure of…I said, “Tara, Sara, Mara, Ara, Bara, Cara, Dara. That was the day I decided my first daughter would be Cara. I never forgot that day, and my oldest daughter’s name is Cara, although most of her teachers called her CAR-a and that got on her nerves. I also believed I had ‘made up’ the name and it crushed me to find out that one of the Kennedy girls had the same name although they spelled it incorrectly-with a K.

There is another day like that one, etched in my cranial DVD that startled me the first timeI retrieved the memory and pushed ‘play’. I was around 15 years old and for whatever reason, I was considering the various ways in which I might die. I’m sure it’s perfectly normal for most young people to experience a fear of dying at some point; around the time we figure out that we aren’t immortal and that people do die. I went through that stage when I was about 21 or 22 and spent night after night staring at the ceiling, tears welling up at the thought that I was going to die.

The day I remember was years earlier and I was not afraid at all. I had the same matter-of -fact attitude I had when I made the decision about Cara and my three other children. I considered car wrecks and plane crashes and discounted all forms of tragic, sudden death. I simply said, “I will probably die of cancer”

A few days after my first diagnosis, I remembered this pronouncement. “Is it possible”, I wondered, “that I’m one of those psychic friends, or some kind of seer?” (I knew that word because I do lots of crossword puzzles-and not the TV Guide kind. I only  do the challengers).  MW only shakes his head when I say such things out loud. I have learned over the years that I have a severe case of ‘open mouth and everything comes out’ syndrome. Some people admonish one to think before one speaks although this, I can promise you, I rarely, if ever, do.

Perhaps I have this grand sense of myself that makes me think that everything I think,every thought in my head is so very important; erudite, if you will, that these things must be brought forth and shared with the world. I expect perhaps that something I have said will be quoted one day. And now that I’m thinking about it, why wouldn’t all writers of poetry, prose and song think the very same thing?

Introduction To My Journey

Although I am not a ‘newbie’ to blogging in general, I am new to this site and format. I know the objective is to sit down, let the thoughts flow down from your brain, through your arms, into the fingers and on to the keys. Apparently. I have done  just that.

Now this is the part that gets a little hairy…I have to figure a way to start this moving.

So,I should start by saying that I have cancer. I have also had cancer. The first time it was fairly easy; Debbie, you have too many cancer speckles in those ducts to do a lumpectomy, so we’re gonna need to remove the breast. Done, no more cancer. A year later I had some symptoms on which I will elaborate when we know each other a little better, let’s just say…they were yucky. That time I had waited a while before going to see my GP and they found a stage 2 adenocarcinoma in the lining of my uterus.

After the surgery that made further pregnancies impossible, I have had the myriad of treatments, side effects, etc. that come along with this circus. They got most of it but a couple little buggers might still be cruising for a good place to go forth and multiply. So, without having heard the NED, or cancer free announcement, I continue to know that I have cancer. It is after all, an incurable disease and one day I will hear the news that it has spread and that will be that. It’s my card and I’m gonna stick for awhile. Thanks Kenny Rogers, I’m gonna hold ‘em.