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.

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?!

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.  

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!  

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?    

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.

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!

Holiday In The Life of Me

Since cancer first entered my life almost four years ago, every birthday is a celebration of my survivorship. Holidays however, are something completely different.

First there is the overwhelming list of things to do, and by overwhelming I mean my mind can only process one thing at a time during a time when multitasking is essential. As an example, I just remembered today that I haven't delivered Girl Scout nuts to a friend of mine that came in a month or so ago. I have no excuse other than I forgot. Plain and simple. This is the way it goes with most things these days. These memory lapses lead to my feeling useless and even stupid.

Next there are of the demands from the outside world. People calling me, begging me to make decisions about when, where, and what to do. The questions that need to be answered ASAP drive me into tears as my slow mind struggles to process decisions.

Finally, there is the ever-present feeling of doom that consumes me. This may very well be my last Christmas. These may be the last gifts I watch my girls open. This may be the last cookie exchange I participate in, or the last tree I decorate.

Sadly, this is Christmas for me. This and a glass of wine to take the edge off.

One Would Think

One would think after two very hard years of being a full-time mom, full-time student, and working part-time, second shift outside of the house that one would get some kind of congratulations for graduating.  One would think one's husband would say something about it, anything about it.  One would think that perhaps, one would get a little praise for getting a 3.947 GPA despite the many struggles of having chemo brain (http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/ChemotherapyEffects/chemo-brain).

Just sayin'.

Forgetful Jones?

In 2009, I was diagnosed with stage IV Hodgkin's Lymphoma.  In 2009, my friend Mikey was diagnosed with stage II Hodgkin's Lymphoma.  In 2009, Mikey and his wife put together a team of people to walk in the Light the Night Walk for the Leukemia and Lymphoma society.  He set a goal of $1000, and much to our surprise, we well exceeded that goal!  So many people donated and we were overwhelmed by the generosity and well wishes from those all around us.  The night of that first walk was the first time since my diagnosis that I didn't feel alone, and every year since I so look forward to that one night a year where I can feel the comradry around me; I can feel "normal".

I have forgotten a lot of things, but I have not forgotten my experience and I have not forgotton the feeling of being part of something as big and beautiful as the Light the Night Walk. 

However, I fear many have forgotten.  Our team has raised a mere $180 since May.  A far cry from that first year, or the second, or even the third.  I'm hoping we can turn it around in the next 30 days.

What Cancer Cannot Do? Oh Yes It Can!

A friend posted this poem on his Facebook the other day and while I didn't want to shatter the rose colored glasses of many of his cancer-surviving and fighting followers, I DO have much to say about this poem.

It cannot cripple love.  Really?  Because ever since my "journey" with cancer, there is definitely some love in my life that's been "crippled".

It cannot shatter hope.  Really?  The definition of hope is, the feeling that what is wanted can be had or that events will turn out for the best.  I'm pretty sure I don't have any of this left.

It cannot corrode faith.  Really?  Let me see...faith, by definition is confidence or trust in a person or thing.  Mine?  Definitely corroded.

It cannot eat away peace.  Really?  I haven't had peace since my doctor's secretary beckoned me into his office January 29, 2009.  Not even for one day.

It cannot destroy confidence.  Really?  Tell that to my stomach every time I walk into the oncology clinic.  Tell that to me every time I feel the slightest pain, strain, lump, or bump.  Better yet, tell that to my children who question my mortality.

It cannot kill friendship.  Really?  I would laugh at this statement if it didn't make me cry.  I can name just a few people who I feel abandoned me during the worst time of my life.  I can also name just a few people who I let slip away because my "cancer talk" was annoying to them, or they thought it was high time I "let it go".

It cannot shut out memories.  Really?  This is one is just a joke to me.  Thank you chemo for destroying my short-term memory as well as wiping out a good 10 years of my life and leaving it in a thick haze.

It cannot silence courage.  Really?  Did the person who wrote this ever even have cancer?  I mean people give us way to much credit.  I am not courageous or inspirational or strong.  I am none of those things.  I suffered in the worst pain of my life, in silence because I had to.  I didn't choose to.  There was no choice. 

It cannot reduce eternal life.  No, it cannot reduce eternal life.  But it can, and does reduce mortal life.  

It cannot quench the Spirit.  Right again.  It cannot quench the Spirit.  In fact, since cancer plagued my life I have been thirstier than ever; searching endlessly for some spiritual uplifting.  It cannot quench the Spirit, it can only damage it.

Well, my last cancer check came and went. I finally didn't feel the heavy weight of impending doom like normal. It made me wonder if I'm getting numb to it, like so many other things in my life. I have been upgraded to straight x-rays now, which is bittersweet. I hate that I have to be radiated so much, yet I prefer the accuarcy of the CT scan over the xray. Especially after having so many overlook the cancer in the first place on an xray. I'm pretty sure; however that nothing doctors do or don't do can surprise me now. In other news, there's more evidence that cancer survivors suffer from PTSD. Reading through the symptoms I'm pretty sure I have it...thus the previously mentioned numbness I spoke of. However, my lack of trust of doctors and my unwillingness to spend any amount of time searching for a competant counselor that I trust leaves me to deal with certain things on my own. So for now, I'll suffer through the numbness and surround myself with people and things that draw out extreme emotions and in between days, I feel, things will get back to normal. Sometimes I can feel my hard shell cracking. It just may take more time than someone who goes through extensive counseling.

Follow Up 2.5, part 1

I was in a fairly good mood this morning, despite the feeling of impending doom that comes along with the two-week period of waiting for my six-month check. Once it was time to start getting dressed though, it started. I felt like a little kid; "I don't wanna go!" I talked myself into putting on my scrubs (no metal in them) and forced myself out the door.

I checked in at the front because of the CT and was feeling quite resentful of the pep displayed by the girl who checked me in. I did't like her one bit. She told me I had to pay $291 before I could have the CT and I pictured myself going bananas on her about the healthcare in America. Of coarse I simply said, "he told me on the phone, I only had to pay a portion". After watching her run around like a chicken with her head cut off, I started getting angry. I didn't just not like this girl, I hated her. Finally she returned and told me that I could pay whatever I was comfortable with.

I got my bracelet and went down to the clinic for labs. By this time, I was almost all the way inside my own head talking myself out of throwing up. I checked in and sat. Normally I chat with the receptionist, but I wasn't feeling it. I secretly kicked myself for not just going there first.

They drew my blood in the chemo room which made me further sick. I hadn't been in that room since chemo. The nurse was talking to me and I just wanted to get the hell out of that room! Thank God she was quick, because I was very ready to throw up all over her.

I went down to CT and they took me pretty much right away. These CTs seem to last longer and longer. This once short procedure now seems to go in slow motion as thoughts of what could be inside my chest rush in. It's always cold in that room, no matter how I layer myself. The tech was particularly friendly and although I didn't hate her, I did not appreciate that chipper tone. Misery loves company I guess.

So now the week-long wait begins. Last week I was a little on edge with it getting worse the closer today came. I know this next week will be my own personal brand of hell.

Affected

I just found out my cousin has/had thyroid cancer. I nearly had a panic attack on my way to work. It was twenty minutes of praying, holding my chest, deep breathing, and cursing my mom (how dare she tell me right before I have to go to work). So it got me thinking, how do other cancer survivors and fighters react when they find out someone they love has cancer? What do you do? It breaks my heart that she has to deal with this. It pisses me off that she was told that thyroid cancer is a "good cancer to have". I want to take her under my wing and walk her through every step, but this is her experience and I have to let her go through it in her own way. I let her know that if she needs anything from me, to ask and I suppose that's all I can do.

Dreaming and Dying

Last night I had the most terrifying dream: I was dying. It was so real that I could feel the breathing tube and the nurses doing compressions. I was lying in a hospital bed and I was surrounded by nurses and beeping noises and things kept going blurry and dark and I kept fighting to open my eyes and take breaths. One nurse was trying to get a tube down my throat and that seemed to help me breathe for a minute, but not long enough and I went back into a code. It was so horrible and I don't know if it's a sign that something is wrong with me or a sign that I need to shape up or just because I work in a hospital. Remember the dream with my best friend and the mark on my chest that got the whole cancer ball rolling? I'm literally paralyzed in fear right now. I feel sick to my stomach.

PTSD

I still cannot believe the power of the mind when it comes to traumatic events. The drive to my oncologist's office this morning was the equivilent to walking in quick sand. This normally only four minute drive felt like an hour drive in complete silence with only the voice in my head to reckon with. In fact, I could hear it as if it was narrating my life, "as she drove down that familiar road, she had no idea how her life was about to change". I know, it sounds crazy.

Sitting in that office waiting made me physically sick. It wasn't a long wait, but the waiting was driving me crazy. I got more and more nauseuas every second. I closed my eyes and felt like the room as getting smaller around me. And even after I got the good news that my labs and x-ray were normal, I had to wait in a line of cancer patients to make my next follow-up appointment. That itself had me on the verge of a panic attack. I started sweating and feeling like I couldn't get a full breath of air. I just needed to get outside. I sat down and did some deep breathing with my eyes closed but it didn't help.

Finally, I left and the minute I stepped outside everything just went away and I felt "normal" again. Of coarse we all know that I'm not.

Vietnam

I was at my parents house with the twins the other night sharing a bottle of wine (or two, or three). I was talking about the motorcycle class that I failed and how I decided I wasn't going to go back and finish it. My reason was that I was terrified of dying and that the thought of driving a motorcycle in the city made me very uncomfortable. I stated that should I ever move out to the country, I may reconsider and get my liscense the old fashioned way.

Completely off topic (or so I thought), my dad looks at me and says, "I was thinking about you and you were in Vietnam." I thought it was a pretty crazy thing for him to say, especially because he was in the Vietnam war and never talks about it. I laughed and made a joke about how I must not have made it since I'm here now as his daughter. Then he opened up in his own way by telling me how I was scared that I was going to die every single day, (repeat) every (pause) single (pause) day (long pause).

I'm not very comfortable talking to people about my cancer - especially people who have no idea what it's like. It's become a pet peeve actually to listen to someone who has only known a great uncle who had prostrate cancer or the woman three blocks away who has breast cancer drone on and on about what they think they know. But this was different. We weren't talking about cancer, per say we were talking about the fear of dying and that's something we both had experience with.

He told me he thinks that I have PTSD and I told him I KNOW that I do. He gave me some advice about how the Vietman vets say "it don't mean nothing" and how any time something makes me mad our upset I should ask myself "will this matter tomorrow" before flying off the handle. I told him that I'm quite the opposite - that I feel as if I don't care enough about things; that I let almost everything roll right off of me.

My dad and I haven't been that close for years. I love that man more than anything and think he's the most brilliant, amazing man I've ever known. We just don't have a whole lot in common and after becoming a mom, my mom is my "go to". But this conversation meant more to me than any conversation I'd ever had (pause, repeat) ever.

Impending Check-Up

In just under two weeks I will have labs and a chest x-ray and a week after that I'll get the results. Nothing really blog-worthy; however I'm already feeling the panic.

You'd think I'd get used to this and that by now it would be no skin off my ass, but I'm just not there yet. I'm consumed by negative thoughts about dying and obsessed with feeling for lumps and bumps. I've already decided to demand to see the x-ray results since several doctors missed the cancer on my x-ray in 2008. I know what it looks like on the x-ray and I want to see it.

And speaking of doctors missing things, I've had to see the doctor that diagnosed me with asthma several times recently at work. He comes strolling in the unit and pretty much follows my lead. I used to say hello to him to be "professional" but now he gets the stink-eye. When I see him, I hear my oncologist in my head telling me I'd be dead in six months if they hadn't caught it. I sucked on a steroid inhaler for six months because of my "asthma" and would've kept right on doing it if it wasn't for that "kink" in my neck. When that asshole walks into the unit I just want to spit at him as he walks by me. I want to walk into whatever patient's room that he's in and tell them that he misdiagnosed me. That he looked right at my x-ray, pointed out the "thickening around the lung" and told me "it's nothing to worry about".

I still have a little bit of my cold left and unfortunately it's all in my chest and throat so my mind goes to the dark side. Neck pain? Dark side. Headache? Dark side. I can't wait to get all of this over with. If history is any indicator, my panic and worry will just get worse over the next three weeks until I get my results.

Losing Sleep

Last night I had to force myself to stay up until midnight. I really wanted to get into the online Psychology class rather than having to travel to Gateway in Racine multiple times a week but the class always fills up before I ever get a chance to register. So the plan was to stay up until midnight and register as soon as the date changed to 04/14. I had the hardest time (I think because I worked out for the first time in months) - I kept dozing off and forcing myself awake. Finally midnight rolled around and I hopped online and after one failed attempt, I was registered! I couldn't wait to get to bed.

As I laid in my bed, I noticed the pain in my neck and shoulder and my chest started to feel very heavy. I turned onto my stomach and my arm started hurting. And then I went into panick mode. Convinced I was going to die, I was terrified to go to sleep. I was waiting for a blood clot to burst or a heart attack or stroke. I just laid there waiting and praying.

This is not the first time this has happened to me and I'm sure it won't be the last but I thought it worth blogging about in the Darker Side of Me. This is just one of the many things I don't feel I can talk about to other people - who could possibly understand?

Lonely

With all of these animal deaths I have been asking myself, "Self, if this is the end of days, who do I want to spend it with?" It's actually kind of a trick question for me.

I've been so emotional lately; crying about everything. On the verge of a mental disaster. So I'm kind of in a dark place lately. My sister has a new baby and I never hear from her or see her, except to hear about her and her problems. It's not like I haven't tried reaching out to her - she just ignores me or changes the subject. As a matter of fact, I can't think of anyone who has actually asked me how I am and stuck around long enough to listen.

I'm thinking about going up north to visit my cousin as a way to kinda step back from everything and clear my head and maybe pick his brain for awhile. I just really feel like I need to take myself out of my life and look at it from the outside for a minute.

I need to find some peace.