Wednesday, February 5, 2014

5-Year Dream

January 29th was a day of reflection and disappointment for me.  As I often do, I replayed that day in my head.  The worrying about my twin's birthday the next day and not wanting them to find out until well afterwards.  The thoughts of my girls growing up without me.  The words "cancer" echoing in my mind and the blur that ensued after those words.  The humiliation, the tears, the strength of my mother - all of it came crashing over me.

What didn't happen...what was supposed to happen...what I wanted to happen was for everything to somehow fade into the background of my life.  I thought that after five long years of living in constant fear and submission to this disease, that I would somehow wake up, as if from a bad dream and move on.  I thought that I'd feel different.  Better.  I thought I'd feel celebratory and excited for the next chapter but no page was turned.

I feel the same as I did five years ago.  The scanxiety, the frustration, the lack of understanding from my friends and family as to why I don't just get over it; why I don't think positively about my future.  I've realized that cancer is ingrained into my being.  Just as my eyes are brown and my eyebrows are thick, I am cancer.

Wednesday, September 18, 2013

Who's NED?

After 4+ weeks, I finally, FINALLY got my NED!  For those of you non-cancer-lingo-knowing people, that's the "All Clear" I've been waiting for.

I've spent these weeks in my little denial bubble (as a good friend told me, "sometimes you just have to go there") and I was pretty happy there.  I can say very honestly, that I really did not want to know the results, much to the chagrin of my family.

I know I drove my husband crazy with my going about like the cloud of impending doom was not hovering above my head, smiling and singing and baking.  As long as I did not have bad news, I was absolutely happy.

Yesterday though, I thought "enough is enough".  I think my husband lost at least 5lbs this week.  I called the clinic and talked to Dee (name changed for privacy purposes).  I love this woman.  I honestly think she makes the cancer experience better for the patients in that clinic.  She told me doctor wouldn't be in until Thursday to which I replied, "are you serious?"  Because it was late in the day, she told me she'd have a nurse call doctor in the morning (today) and let her know I'm waiting.

So shortly after 9:30 my cell phone started playing the theme from Law and Order: SVU and I recognized the number immediately.  It was Jay (again with the clever name changes), my 2nd favorite nurse in the clinic.  My whole body tingled and froze as she started talking to me.  I felt paralyzed...my happy denial bubble was gone and I felt naked sitting there at my desk.  I immediately regretted answering my phone while I was at work.

She began telling me they saw NED.  Oh how I love that mother trucker!  No Evidence of Disease!  None!  Clear!  I yelled "all clear!" in the office and got all kinds of yays and then I started crying.  Apparently that bubble was keeping all of the emotion away from me and it all came swirling around me after I got the news.

This experience has brought out the best and the worst in me and I cannot wait to go down to the Light the Night walk tomorrow night, put on my "Survivor" t-shirt, and walk with my favorite people, celebrating this victory.

Now, who wants to have a drink with me?!

Monday, September 16, 2013

How Can I Not Want To Know?

With this recent scare, I have put off my scan, and have made it very clear that I did not want to know anything until after my daughter's birthday.  My family, and possibly some friends cannot fathom my not wanting to know.

My husband was in such a state Friday because of my scan that he came home from work.  I was smiling and relaxed, making birthday cake in my clueless bubble.  He was sick to his stomach.

So how could I not want to know anything?  It's simple.  I've been there, done that.  I don't want to go through it again.  I don't know if I have the strength to do it and so I'd rather live in the bliss of an oblivion.  When I think about recurrence, I think "I don't know if I'd do anything about it anyway".  And therefore, it is easy for me to relax, and enjoy my daughter's birthday with my family.  To live in the moment.

In the back of my mind I know it could be the last family gathering, but I've lived with that knowledge for just over four years now.  I know my time is limited.  I no longer have that sense of being indestructible.  I'm fully aware that at any given moment, I could be gone and to be perfectly honest, a huge part of me just doesn't want to know.

Now, I don't have a death wish.  I don't want to leave my daughters or my life and I'm sure if it came down to it I would fight like hell.  I just have had to accept and live with the knowledge of my mortality for some time.  Every family gathering, every get-together with a friend; I try to savor them and hold them in my heart.

And so when it comes to this, I have to have faith that whatever the outcome, it is what is meant to be.  

Friday, September 13, 2013

I Hate Getting PET

I had forgotten just how lonely PET scans make me feel.

I got up at 6am like always.  I'm starving.  I ate at 4:30 the day before and had only water the rest of the evening.  I begrudgingly made the kid's lunches and fed them breakfast.  I put on my metal-free attire and drove them to school.  As they each kissed me good-bye my mind shifted into overdrive, down that dark, dark path.  I drove off with tears and made my way to the hospital.  I put on some Edward Sharpe & The Magnetic Zeros to calm my soul and after a few songs, I felt myself starting to steer away from panic.

I got to the hospital and checked in.  It is so quiet in the Nuclear Medicine department.  I suppose that's nice for some, but for me it's an opportunity for the chatter in my head to begin.  As a tech walked me to my little dark room, she  explained everything.  I wanted to tell her just to get on with it, that it wasn't my first rodeo, but I sat quietly, focusing my mind on staying calm.

Enter the "nuclear" part of nuclear medicine - the tracer.  She carries in the iron thermos and I almost laugh as she tells me there's no side effects.  Yeah, that's why you can't even take the syringe out of that iron tube.  No side effects.

During the first 1/2 hour of sitting in a dark room "relaxing", I swear I can feel the shit working it's way around my body.  I've always thought that.  There were moments when I'd get a pain and I'd think to myself that maybe the tracer has found it's target.

There's nothing in this room.  A recliner, a table, some medical supplies and a call button.  Nothing else but the chatter in my mind, which continues to increase as the first 1/2 hour passes.  The tech brings me some water, indicating the 1/2 way mark for waiting alone in this dark room.  The second 1/2 hour seems longer.  I can't feel the tracer anymore, so I don't even have that to distract me and all the voices in my head have joined forces into one big voice.  I try to think lightly, hum songs, breathe deep, but nothing can bring me back now that I'm heading downhill into the darkness of my mind.  Just as I feel myself on the brink of panic, a tech comes along to take me to the machine.

The room is about 15 degrees colder than the rest of the department.  I'm instantly aware that I am not wearing a bra.  Of coarse this tech is a man.  He pampers me for all of five minutes - giving me pillows under my head and knees, a heated blanket, and making sure my arms are comfortable above my head; as if that's even possible for prolonged periods of time.  Then he straps me in and with a smile, he flees to safety.

Up I go.  Up and in and out and in and out and in, in, in, in, in, in, in.  I try to doze off, but either the movement or the voices wake me up.  My hands are numb and cold.  There should be a tv on the ceiling or music in the room, or let a friend read you a book.  It's so, so silent in there.

When it's over, the tech tells me "good luck with everything" and sends me on my way.  I welcome the exit of this cold room.  I walk as fast as I can to my car; as if that would make any difference in the results.

Afterwards a calm came over me.  One I'm afraid to speak of, and afraid to acknowledge, but it was there.  Now, time to eat!  

Tuesday, September 3, 2013

Sweating


I've been sweating all day long.  A symptom of my PMS.  Sitting here sweating, got me thinking about the exercise class I'm supposed to start on Friday with a friend of mine.  I was pretty excited about it.  I signed up for a Mayor's Fitness Challenge with some other friends so this class would help keep me in line and let me spend time my friend.

However given everything that's going on, I'm second guessing myself.  Should I still sign up?  Should I spend the money?  If I've relapsed I'll be told to stay away from crowds.  I'll have to limit my activity and my availability would suddenly be very compromised (along with my immune system, no doubt).  But if I'm fine, and I didn't do I have to wait until November or December for the next class.  And what if I get no answers at all?  What if there's a big fat question mark on my next scan?  Should I be living my life scan to scan?  

That's not what I wanted for myself and yet I have to admit that anytime I come close to a scan I'm hesitant about making any plans until after I meet with the doctor.  I'd like to say this time is no different, but I fear that it is.  I guess you could say I'm sweating bullets this time around.  All of this sweating has to be good for a pound or two right?    

Thursday, August 29, 2013

Happy CancerversaWHAT?!

August 18th marked the 4 year anniversary of my last chemo treatment, but I was saving my happy dance for August 19th when I met with my oncologist for the "All Clear".  Unfortunately, instead of the All Clear, I had some crazy lab results so she wanted to recheck my labs as well do a neck scan because of some neck pain I had been having.

And so I had to postpone my Happy 4 Year Cancerversary announcements until after my labs and CT came back normal.  The labs came in the next day - back to normal.  After a week and a half of waiting for authorization and scheduling, I finally had the CT yesterday.  Two pokes in the left arm to no avail.  They finally got a small vein on the right side - neck CTs require two injections of dye - one for each angle they scan.  Fun times.  More poison and radiation.  How long before the nurse calls with that All Clear???

Finally!  I see Aurora on my caller id today and anxiously answer, only it's not a nurse.  It's my oncologist.  The numbness sets in.  Doctors don't give All Clears on the phone.  Ever.

My lymph nodes are enlarged.  Not enough to say tumor for sure, but large enough to be noticeable.  After going back and forth on how I've been feeling (absolutely fine other than more tired than normal), it came down to either just keeping an eye on it or getting a PET scan.  Ultimately, she opted to order the PET scan.

So now again I wait.  Wait for the insurance.  Wait for scheduling.  Wait for an answer.  Wait for my all clear.

An All Clear that may not come, forcing me to remember everything I went through and imagine if I would do it, could do it again.  I don't think that I can.


Monday, January 28, 2013

It's Been A Long Time...

It's been a long time since I've laid in bed fighting off the fear that if I fell asleep I would die, but last night I had an episode of that panic. I tried to rationalize it, telling myself that is was because January 29th is hours away, or that maybe it was anxiety over my upcoming tests, but honestly I think I may have just gotten too comfortable with living. Perhaps I needed a reminder that I'm on the clock.

At any rate, I'm tired as hell today and my mind is racing with thoughts of dying. Happy Monday!