I Have Perfected Lemonade; Can I Try Making Something Else?

The last 2 months have been seriously challenging.

I have been having some serious bone pain. On it's own or if it had visited and hopped the next train, probably not concerned. But, it wasn't alone; it's sidekick is chest pain and shortness of breath, some really goofy headaches and fatigue that I can't shake.

Kinda sounds like Lyme disease, right? That is what I hoped and prayed for. But, that test was negative. My blood work AMAZING: no vitamin deficiencies, tumor markers not elevated, and ANA tests were negative.

Unfortunately, my PA oncologist seems to have attended the Movie Doctors School of Medicine. "You look fabulous! You're fine!" HUH? Wow, if only it were that easy because I have perfected the art of looking better than I feel when I don't feel well.  Clearly, it was time to find someone with some real credentials and diagnostic tools.

Teaching Moment #1: Know your body. Recognize when something is not right. Unfortunately, as we age, things start going wonky and trust me; you're not popping up on any doctors crystal ball- and they aren't calling you to invite you in for a chat because they got notification that something might be wrong. A good rule of thumb: if it's more nagging and persistent than a baby with a wet diaper, it might be time to get checked out.

Teaching Moment #2: Advocate for yourself. Educate yourself. And push forward to get answers even if it means you have to be a pain in the ass. In all fairness, you're going to have to be a pain in the ass. Buckle up buttercup!

Enter a new oncologist and a script for a PET scan. And that folks, is how I found myself knee deep in Christmas decorations, covered in glitter on Friday the 13th of October waiting for results.

Teaching Moment #3: A cancer survivor waiting to be scanned and twiddling their thumbs (or in my case: decorating for Christmas way too early) waiting for their results is a very fragile creature. I was so thankful for my family and friends that had the good sense to make me laugh, distract me and keep me busy in the pre and post PET scan hours. How can you help a survivor tackle this mass insanity? Just be there!! Distractions are most welcome!

Having a fabulous imagination (which I do) and being seriously armed and dangerous with information (me also!) is a horrible combination in this scenario. I could probably type for the next 6 hours and not adequately explain my state of mind as all of this was going on. Suffice it to say, scanxiety is real and it's epic. I was instantly taken back to the days after Christmas in 2013 when I waited for biopsy results; everything hanging in the balance.

Thankfully, cancer has not decided to go another round with this little warrior. It was the sigh that made all boxers jealous- and it was heard for miles around. (Only my boxer people will get this one!)

Where does this leave me? Well, at this point, I know what isn't wrong with me. It has been suggested that I see a neurologist, a rheumatologist,  and a psychiatrist. And I need to have an echo. So, if anyone knows "1" doctor that specializes in neuro, rheumatology, cardio, and psychiatry- please send me their number- I'm really tired of waiting to see doctors.

Oh and...I'm a little tired of playing with lemons and my lemonade has been perfected. I need to move on!

I'm Sorry 2014, But I Can't Wait To See You Go!

You never know going forward into a New Year, what the year will bring, except that at this time last year,  I did know.  Mentally, I wasn't even ready for 2014. Hell, I was still writing 2013 on everything when my breast surgeon dropped the news on my husband and I that I had a very aggressive form of breast cancer and that treatment had to be started immediately if I didn't want to die.   It was January 3, 2014; a day that neither one of us will probably ever forget.  Even though it was a year ago, I still vividly remember the morning that the phone rang way too early, it was 7:30.  I remember the exact feeling in my stomach.  My husband was sitting at the counter, and I remember the conversation we were having when the phone rang.  I had just poured a cup of coffee, the dogs were laying on the kitchen floor praying that I would drop them some food, and I had just wondered aloud when my biopsy results would be back.  I was filled with anxiety, an anxiety that a whole bottle of Xanax and 2 bottles of wine, wouldn't have touched.  My husband was telling me that I was being negative as I tried to explain to him that I "just know".  That was when the phone rang.  The timing couldn't have been better if a movie camera crew had been standing by.  I wasn't really aware of it then, but 7:30 is when the breast surgeons office opens, and I was their first call of the day.

The day that my world turned upside down was a Friday,  the first Friday of the New Year.  I didn't want to hear "The doctor would like to see you immediately!"  And I really didn't want to hear, "Make sure someone comes with you."  Looking back, I wonder, how did I not drop my coffee cup, how did I not pass out right then and there? Those were not the words that would be uttered when a clean biopsy report was sitting in the hands of a breast surgeon.  I can remember having a hard time finding something to wear, and I couldn't seem to get my hair "just right." Who worries about what they're wearing and if every hair is in place when they're about to be told they have cancer?  I did, and it was probably one of the ways that mentally I was preparing myself for the battle that was ahead of me.  When you're at your worst, you have to look your best.  Looking at myself in the mirror before leaving the house, I assured myself that there was no possible way that I could have cancer, I didn't look one bit sick at all, and besides I had things to do.  My husband I were practically newlyweds.  We had only had 9 years together. There were things we wanted to do.  I was running a business, my husband depended on me, we had just opened another location.  (There were now 4 stores.  2 in Pennsylvania, and 2 in Florida, one of which was my responsibility.)  I had two adorable boxers to mother- one of which I was sure would probably collapse instantly if anything were to happen to me.   I've never been to Ireland.  I've never been to Europe....  These were the things that I thought of as we were driving to Winter Park that day.

The mental and physical chaos started that day at about 12:15.  After attaching the "C" word to my identity,   my surgeon pulled out a piece of pink paper with 2 nipples on it and laid out what was to be the next year of my life.  Just like that, here is what 2014 will hold for you. (Really, pink paper with nipples?  Are you kidding me?)  I was later thankful for that piece of paper, because suddenly I had so much to do, that I had no idea where I was supposed to be and when, although I truly grew to hate the sight of it.   That piece of pink paper hung on our refrigerator for most of the year, and I took great pride in crossing things off of my "Cancer To-Do List"  I remember thinking, "Just go!  The sooner you go, the sooner it will be over with."   You're not Marianne anymore, you're a breast cancer patient, and that bothered me more than you could ever imagine.   I had no idea at that point how true that statement was.  Cancer takes over your life and your identity.  Cancer will occupy your mind and your body 24/7.  Blood work. Chest x-rays.  Genetic Testing.  PET scan.  MUGGA Scan. Meet the Oncologist.  Meet the Plastic Surgeon.  Meet the Radiation Oncologist. Port Surgery.  6 rounds of extremely aggressive chemotherapy.  Surgery with horrible expanders (they didn't tell me that!).  33 Radiation Treatments.  Final Reconstruction (6 months after radiation ends...  They didn't tell me that either!)  For a woman without even a primary care doctor, all of this was way too much.  And they never told me how I was supposed to tell my family and friends that the big "C" had invaded my body.  How was I supposed to do that?

The fog created by this flurry of activity was nothing compared to the chemo fog that would soon settle over my brain.  I remember the exact moment that it became real.  I was lying in the hospital bed, waiting to be wheeled into surgery to have my port installed.  I wanted to jump up and run like the wind, this was all a dream.  There was no possible way that this could be happening to me, but I never would have had the nerve to rip all of the IV's out of my body, and the gown that I was wearing, well it had no back. There was no possible way that I was going to make it the whole way home wearing an open back hospital gown, and my mother had my car keys.  I'm weird about anything entering my veins, and very squeamish (or at least I was at that point.).   At 39, they were about to put a line into my chest so that they could pump toxic poison all through my body.  I kept thinking that I had to get out of there before they made a horrible mistake.  I remember looking around the room for a baseball bat, surely if I could just get my hands on a baseball bat, this would all be over.  Did I really think I was going to club my way through the entire nursing staff at Winter Park Hospital and my mother?  This was not happening to me, they had the wrong girl.  Obviously, the drugs they were giving me were good ones.

It became very clear 3 days later when I entered the infusion room for the first time.  I fought it, I really did.  I so badly wanted to be healthy I just wanted to be me again.  I will never forget the smell of that room or that office.  It just didn't smell right. Cancer has a smell.  I've never liked being stuck in bed for a day with a head cold, and now all of a sudden, a wild beast, capable of killing me was raging inside my body an was about to be attacked with a poison capable of knocking an elephant down.  I was going to be sick, and I probably wouldn't feel like myself for a long time, and inevitably, there would be days when I would spend a lot of time in bed (Thank God for the boxers!). That infusion room was a huge dose of reality.  There were bald people all around me.  Some of them looked really bad, but some of them didn't look sick at all.   I'll never forget the young man (he was probably in his early 20's, if even that) that threw up the entire time he was there, and he was so weak that he couldn't even walk out of the room. (Not what you want to see heading into your 1st chemotherapy treatment).   I'm not sure if that was what did it, but seeing that, I promised myself that I wasn't going to be sick, well at least not that sick.  I really thought that I had some kind of control over it, which I didn't.  You don't control cancer, cancer controls you.  The fight to keep everything in my life as normal as possible started at that moment.  My Inner Superwoman kicked in and I vowed to fight back with everything that I had.  This was not going to get the best of me.

And so it started.  The push within myself that previously had been used to make myself go to work when I hadn't had a day off in 6 weeks, and I was so exhausted that I had no idea how I was going to get through the day,  much less drive there in the first place,  was quickly changed into the push that made me get up every morning, get dressed, and put my makeup on.  What a drastic change!  I could so easily push to the back of my head that the entire room was spinning, every bone in my body ached like a had a 104 temperature, and I was so tired that I wasn't sure I could stand.  If I wanted it bad enough, I could somehow manage mascara and clothes that actually matched.  I fought the battle every day for nearly 5 months.  I just kept going.  I felt like crap, but I still fed the dogs almost every morning, and every evening.  I still did laundry, I still went places, and I still attempted to keep the house just as clean as it had always been.  No matter what, when my husband walked through the door at the end of the day, I managed a smile, a smile meant to convince him that yes, I was all right. And somehow, even with the chemo brain fog that took over my life, I managed to do all of the administrative tasks for the business that I was used to doing (and prepare a tax return for 3 businesses for the accountant), although I hated myself for all of the mistakes that I made.  I hated the fog, I hated that I was not as sharp as I was before.  My husband and brother have always teased me for being a dingy blonde, now it was actually true, except that my beautiful blonde hair was gone and this was far worse than any dinginess that I had ever displayed.  I'll never forget the day that I was unable to spell my last name at the pharmacy.  Sure, my mother is still laughing over it, but it was horrible and extremely embarrassing.

Somehow, through the grace of God, the support of my husband, mother & father, friends & family, and my 2 boxers, I made it through those 12, dreadfully long months. There were so many people rooting for me, and there was no way that I could let them down.  I had to do it.  I had to beat cancer! I finished chemo, I had a double mastectomy. I survived saline being pumped (with 2 needles that were longer than my arms) into the 2 bumps where the breasts that God had given me had been for the better part of 25 years. (yes, it definitely felt like an elephant was crushing my chest, but I managed.... not without a few choice words, but I did it!),   I reported 5 days a week for 6 1/2 weeks for radiation.  I smiled at the girls that set me up for radiation every day, even though the pain of lying on that table some days, was way more than I could bear thanks to my the dislocated scapula.  I had nearly 1 year of Herceptin infusions.  I lived through mood swings, night sweats, insomnia, nueropathy, bone pain, fevers, nausea, loosing my hair, my finger nails and my toe nails, and even the loss of my brain.  I did it!

And, throughout it all, I pushed and struggled to get back the body that I had prior to all of this cancer business.  At the end of 9 months of treatment, I found myself feeling like I had just been through a huge war, A very brutal, and bloody war.  I feel scarred, undeniably changed and scarred.  I was, and still am exhausted, and I definitely do not have the strength or the endurance that I had before cancer.  I work to accept the fact that someday, just not today, I will be able to do all of the things that I could do before. The mind is a very powerful thing.  I am grateful every day that my brain functions seem to be returning, and that every day, I do feel just a little bit stronger, but it's just not fast enough.  And I am grateful and blessed that the horrible disease that threatened everything I hold so dear, is gone from my body.    

After all of this, I was shocked that my sense of humor was still intact, how could it remain through all of the ugliness brought on by cancer?  And how was it possible that it was incredibly stronger than it had ever been?  My sense of humor as I went through treatment for breast cancer was my armor.  It kept me from crying, it kept me from being negative, and it kept me from thinking "What if?"  My sense of humor, my smile and my ability to find comical relief in just about everything I endured was what got me through it.  I push myself daily to keep going and not think about the "What ifs" or all of the side effects of the chemo and radiation that are a daily reminder of what I have endured during 2014.  I warrior on.

So, as I think about the end of 2014, and everything that I have lived through, I'm not sad to see it go.  I just can't look back fondly on all of the challenges and pain that we have endured during the last 12 months.  This has undeniably been the most challenging year of my life, and I'm glad that it's ending.  I hope and pray that 2015 is a better year for me and my family, and that we never have to go through this again.

And just for the record... I am sick of pink.

So, I'm Not Okay With "New Normal"

Today marks 5 months since my chemotherapy ended.  It's a little hard to believe it's been that many months especially since the effects of those wonderful life saving toxins are still present, and boy do they remind me on daily basis.  It's almost as if my body is angry with me for letting them pump that horrific stuff through my veins.  Thank goodness it can't talk to me, because I'm sure it would have the mouth of drunken sailor combined with the mouth of a seriously angry truck driver.  Funny, but I remember last month right around this time looking at my fingers and thinking that the weirdness in my fingernails would probably be gone by the time I hit the 4 month mark.... It was shortly after that that my big toenail decided it was going to fall off.  (Just so you know, toenails grow back seriously quickly... it's incredible, so have faith if you find yourself in the same situation.) Boy, was I wrong.  Today, I'm looking at my fingernails and thinking that if grabbed the clippers and trimmed them, with the exception of 1 nail, my fingernails would look normal.  My eyebrows and eyelashes have also decided to return.  Score 1, or maybe 3 for normalcy, right?

...And then there is my brain, or lack thereof.  This is my biggest concern.  Is it ever going to function on a normal level again?  Will I ever be able to recall my date of birth without reaching for my drivers license and wondering, "Hey, who is that long haired blonde?"  Last night, I found myself standing in the middle of the garage with no clue, and I mean "ZILCH" why I was there. I asked Lucy and Duke both, but they weren't talking.  I think they might be starting to get a little concerned.  I still start doing things and forget what I'm doing.  I guess that's why at any given point in time, there are always at least 10 windows open in my browsers.  For 3 days now, I've been trying to order that miracle cream from Clinique that's going to make those lines around my eyes disappear.  I still haven't done it, so yes, the lines are still there.  I can't believe that on top of everything else that I'm adjusting to, I have deal with aging too.  Cripes, I'm only 40.

Friday, I saw the oncologist.  I've graduated to the point where I only see her every 9 weeks... hey, it's progress.  I'm just not sure my lack of patience would tolerate me seeing her every 3 weeks, my appointment was at 9:30 and supposed to be the 1st appointment of the day.  It was almost 11 by the time I saw her... I was getting ready to stick my head out of door and yell "Hey, anybody out there?".  I can't help but think that being that they are a cancer office, they should be able to appreciate just how precious time really is....  I seriously had to pee (yes, this is an ongoing problem with me...) and I was out of coffee.  I should just take a whole carafe of it when I have to see her, and maybe lacing it with something a little stronger is not such a bad idea either.  I had a long discussion with her about my brain, and it's refusal to cooperate on a normal level.  She laughed at me and said that I'm being too hard on myself, it's only been 5 months since chemo ended... I certainly hope that we're not still having these conversations 5 years from now.  On a very positive note, she mentioned that she spent a lot of time reviewing my pathology report (slow, and boring weekend at the lake, maybe?) and I am definitely not ER positive.  So, there will be NO TAMOXIFEN for this gal.  Woopie.  I was prepared to do battle on that one.

So, all along I have told myself that I have to accept the "new normal".  Then the other day, I was reading a post by another breast cancer survivor.  She raised a very valid point about new normal.  Does saying that I am okay with the new normal mean that I am settling, and accepting things the way they are?  So, I've been thinking about this in the way that someone who is mentally impaired thinks about something...  And the more I think, the more I realize that I AM NOT OKAY WITH NEW NORMAL.  While I have no desire to live so much in the future that I miss what's going on now, I realize that I am not okay with certain things the way that they are now, and rather than saying I'm okay with it, I need to take action and make plans to change the things that I cannot live with.  There are things that I know that I cannot change- I can't change the fact that I had cancer, and that I will always be at risk for an occurrence. Pet scans, and blood work will be a part of my life, for the rest of my life.  But, I am not willing to accept this fuzzy, uncooperative brain, and I'm not willing to accept the side effects of the cancer treatment that are bothering me.  It's time to take action and fix this situation.  I am a take charge kind of person, and I've never "settled" for things, why should I start at 40?  I mean come on, I kicked cancer's ass... I can kick the side effects of cancer treatment, right?

Rest, Relaxation, and A Complete Meltdown!

I know.  I have been missing in action for more than a week.  But, I have a lot of good excuses.  Seriously, I do.  It's been a very busy 10 days.

The week of August 3rd, Rob and I took the dogs and headed up to the Georgia mountains for a little- oh heck- strike that- A LOT of rest and relaxation.  We had an overabundance of peace, even though his cell phone still worked there.  (I will admit, I had secret thoughts about throwing that damn thing in the creek and pretending that I didn't know anything about it.  Lucy and Duke were no help, they're both past the point of chewing on things that they aren't supposed to be chewing on.  I secretly prayed that a little boxer mischievousness would come over Lucy, but it wasn't meant to be!)

We rented a cabin, in the woods on a creek in Blue Ridge, Georgia.  It was heaven on earth. (Doesn't it just scream come on in and curl up by the fire with a boxer?) And the Georgia mountains are absolutely fabulous.  Nothing but blue sky and tons of green trees for as far as you can possibly see.  I've never been in the Georgia mountains before, so I was completely blown away by how spectacular the skylines really are.  We just don't see miles and miles of green here in Florida.  And there are certainly no hills covered in green trees.  I am a Pennsylvania girl- a country girl- I miss the trees and the amazing hillsides.

We sat on the deck with Lucy & Duke every morning drinking coffee and listening to the creek.  Duke and I ventured down the hill a couple of mornings to collect twigs to build fires at night.  All I wanted was to roast a marshmallow or two, but somehow that never happened (maybe it was the little voice in my head that kept saying a marshmallow does not fall under the category of clean eating!).  The fires did happen, and they were amazing.  What is it about the smell, and the sound of a camp fire that just takes you back?  I guess I grew up around a bonfire, so no matter how far from the country this little girl gets- it will always be a part of me, and something that I enjoy immensely!  I was very happy to see that my fire building skills are still intact!  Yes, I was a Girl Scout.

The dogs were in 7th Heaven, and I was overjoyed to have them with us.  It's always the dogs that make me eager to return home from vacation- I always miss them so much when we're away, so it meant a lot to me to have them on vacation with us.  And Lucy, positively loved playing in the creek. (Duke was only willing to dip a toe in.  Shh... I didn't tell anybody that!) I was so proud of her- she did so well off leash.  Of course, Duke has always done well off leash- he is stuck to his mama like glue no matter where we go!  That boy isn't going anywhere where he can't see me.

I seriously could have stayed in Georgia.   Did you know that Georgia is in the wine business?  We didn't, but they are, and they are very good at it too!  Yes, I'm admitting to the fact that we drank way too much wine in the 5 days we were in Georgia.  We didn't eat any peaches, but we did have a cantaloupe that was as sweet as the ones my Grandad used to grow- that really took me back.  And the day that we bought the cantaloupe would have been his birthday- I think he would have really liked that.  He was always so proud of his melons.

We got home late on Thursday night- you can shorten a 9 hour drive considerably when you go 95 miles per hour.  I was thankful that none of the many state boys along side the road nabbed me, but radar detectors help a lot with that.  Friday was catch up day.  Why is that when I leave for 5 days, there are 30 messages on the voicemail, and 200 faxes that require my immediate attention?  It was just such a switch from the calm that I had just left.  All of the paper made me want to scream.  I would have loved to just stand over the trash can with it and pitch but that would have been a disaster of epic proportions.

Saturday was my birthday day with my 2 best gal pals.  I started the morning off with a trip to the Woodhouse Day Spa.  I had the most heavenly detox wrap.  (Of course, I was seriously in need of being detoxed... between the chemotherapy and all of the wine I drank in Georgia, my body was reeling from the shock!)  We followed our trip to the day spa with a long, girls lunch at Seasons 52, right on the water.  It was beautiful- until a storm of hurricane like proportions moved in and we were stranded.  (I'm guilty, it was all my fault.  I took the convertible thinking it was a great day for a ride with the top down.  And it never fails to rain when I have those kinds of thoughts!)  Lunch was amazing, and I had a blast with the girls.  I felt so spoiled and pampered- and blessed to have 2 friends who went to epic proportions to make me feel incredibly special.

Monday I reported to Florida Hospital for my radiation films- it was the appointment that had hung over my head the entire time I was on vacation.  It was my first time in the big, scary radiation machine.  While the process itself was not intimidating- it was just like getting an x-ray, the marks that they left all over my body really freaked me out.  I didn't know how bad it was until I got home and looked in the mirror to see my entire chest and throat covered in black and red marks.  I guess that up until this point, I just didn't know how much radiation I was going to be getting.  It seriously messed with my head.  I immediately grabbed a washcloth and a bar of soap and started scrubbing, but no matter how much I scrubbed, the image stayed in my mind.  Two days later, it's still there even though most of the marks are gone.

I know in my head that I have to do this if I really want to be sure that the cancer is gone. I know it's the best thing, it's the last step in this whole curing cancer business.  I know there could be nasty little cancer cells floating all through my body right now just looking for a place to grow, I have no way of knowing.  I'm praying that once radiation is over with, that I will have some peace of mind that I'm not going to be battling cancer all over again, but somehow I just don't think that thought is ever going to go away.  I think that once you have cancer, that thought is always a part of you.

They wanted to do my first radiation treatment yesterday.  But, somehow, having my first radiation treatment on my 40th birthday just didn't seem like a good idea.  I wanted no part of it.  So, today, August 13th is my 1st treatment.  When I was there on Monday, they gave me a schedule.  It only has 28 days of treatment on it, I was expecting 33, so I need to ask them today if the plan has changed.  Wouldn't that be a gift?  I'll probably have a melt down if they tell me that they made a mistake, but I'm going to wait and see what they say.

Monday was just too much for me.  For some reason, even with everything else I've been through, that radiation appointment was the one that sent me over the edge.  Maybe it's the fact that I've been so calm through all of this, maybe it was the calm after the storm.  I'm just not sure.  I just know that Monday night I just freaked out.  I'm sure it's sounds crazy that I went the whole way through multiple PET scans, 6 chemotherapy treatments, and a double mastectomy and then I went a little nuts.  I think the last 7 weeks of nothing going on was too much for me.  I probably would have been okay if everything had kept going, but sitting it out for 7 weeks gave me way too much time to think.  And the butcher at the grocery store who helped me find bones for the dogs, was just trying to be kind when he saw the marks all over my chest and throat.  But, his story about his wife's breast cancer returning not once, not twice, but 3 times made the idea of a straight jacket seem comforting.  If that wasn't enough, telling me that she lost her voice compliments of the chemotherapy just sealed the whole deal for me.  I hated to be rude, but I couldn't get away from him fast enough.

I really think that there is some room for improvement in the way that doctors deal with cancer patients post-treatment.  There is a huge disconnect that is challenging even for the toughest warriors.  You go through many months of endless doctors appointments, tests, and treatments, and then all of a sudden, there's nothing to do.  And for them, it's all over, but for the patient, the mind is left to wonder.

Never fear, I am okay today, good even.  My meltdown was something that had to happen.  But now, I am  ready to rock radiation, even if I am a tad nervous.  I will be better once the first treatment is done.  I think the meltdown was good for me- even if my husband thought it was completely insane.  Ironically, I still haven't gotten angry.  Now I am left to wonder if that's going to rear it's ugly head sometime in the near future.

I Must Have Been Meant To Cry Today

I saw the oncologist for the first time today since the end of May.  I don't mind these appointments, other than the fact that they never seem to run on time and I inevitably spend a lot of time sitting in a very cold (teeth chattering kind of cold) room wondering if they forgot about me.  Funny, today just at the exact moment I was wondering that very thing, the nurse comes in and says to me," We need to re-weight you!".  I admit, I was a little confused.  She said that "doc" was concerned because I seemed to have lost a lot of weight since the last time I was there (end of May.)!  This is good news, right?  

I had 15 minutes after being reweighed to laugh over the situation.  All through chemo, I hated being weighed. (And the oncologist knew that I was none to pleased by my chemo pounds!)  Those insane cravings that I had the whole way through chemo were not kind to the number on the scale.  Funny, now I don't mind being jumping on the scale (and letting everyone know exactly how I did it!)

Finally Doc appears.  On the agenda for today's discussion:

I don't really know what my future holds after my Radiation treatment is done.  My pathology reports came back very weakly ER positive. (Actually, the breast surgeon said she considered it ER negative.) What does this mean in cancer speak?  Well, it means that if they give me hormone blockers (more medication) after radiation, it will only kill 4% of any remaining cancer cells.  (Huh?  I thought that radiation was going to do that?  At this point, I am thinking that if chemo, surgery and radiation haven't killed them, they're probably not killable!)  Not very good odds, especially when we start talking side effects.  But, I'm going to hold off on making any quick decisions, and I'll let her explain her case to me when radiation is over.  Just one day at a time.  I've got 33 radiation treatments to get through first.

They're scheduling me for another echo-cardiogram to check and make sure that the Herceptin is not damaging my heart (this always frightens me- just the possibility that it's killing my heart... it kinda freaks me out).  They'll do these every 3 months....  So, by my calculations, that means only 2 more of those.  And then of course, she wants to do another PET Scan immediately following radiation.  Here comes the anxiety the everyone who has been in my shoes has told me about.  I didn't think they would do another one so soon, I just had 1 in May.  I guess that once the results arrive back in my lap, I will feel better for 6 months, until they order the next one, knowing that the sneaky little bastard didn't find his way to some other unsuspecting spot in my body.

My oncologist always sits down, and has a chat with me.  I always feel like she wants to know exactly how I'm feeling and what's going on in this goofy little brain of mine.  Today, we chatted a little bit about my energy levels, my weight loss, and how I was feeling in general.  Of course, she wanted to know what I was doing when I told her how good I was feeling.  

... And so. an hour and a half later, I was on my way to treatment.  I love to work the chemo room.  Everyone's got a story, or something interesting to tell me that will make me smile. And sometimes, it's my job to make someone smile.   Today was no different, although it was a whole new room!  I knew no one!  I did however get winked at by a 90 year old man- he was quite adorable.  His daughter apologized for him and told me he's a dirty old man. Great!   I found a cell phone in the bathroom, and thankfully was able to locate the owner because of the screensaver picture- she seemed quite shocked that I had returned it and not taken it!  I explained that one cell phone was enough, heck, there are days when I would gladly give the one away that I have.  

Then it happened.  It was somewhat inevitable I suppose.  In all the months of going to chemo, I didn't meet any patients that were terminal, stage 4.  But, it happened today, and it took everything I had in me not to cry.  Stupid cancer.  Stupid, dumb breast cancer.  Because it was breast cancer it hit me so hard.  I'm still feeling it 3 hours later.  Good God, I'm fortunate.   And what do you say?  I'm sorry doesn't really seem to cut it. I really didn't know what to say to her, but she was shivering, and shaking all over.  I got her a blanket, actually 2. I didn't have any words for this woman, but I could get her a blanket and cover her up. But I still felt horrible for not knowing what to say to her.  

Then it happened again. What are the odds?  (Apparently, the cards were stacked against me today!) I strike up a conversation with the woman sitting in the chair next to me.  (I had been trying to read, but I was completely unable to concentrate!)  Her husband is asleep in the corner with IV lines running into his arm.  She explains to me that he's got stage 4 mouth cancer that has spread to his throat, lungs, and lymph nodes.  She goes on to tell me that he's so sick from the treatment that he has lost 40 pounds- his only source of food is a feeding tube.   She goes on to tell me that she lost both of her breasts to cancer, part of her lungs, and some of her intestines.  She tells me that she's always been the sick one.  My heart really went out to this beautiful, old couple.  We talked for about 20 minutes.  As I was leaving, she hugged me and told me that I was going to be just fine, and told me to keep on fighting! 

I must have been meant to cry today.

Beam Me Up Scotty!

So, yesterday was my first real venture into the world of radiation therapy.  I had no idea what was going to go on, or what they were going to do to me, but I reported as scheduled, because I'm a sucker.  I'm not sure if this should concern me or not, but I sat in a patient room for about an hour hearing whispers (No, I am not crazy!  No, I am not hearing voices!) from the halls, "Where is Mrs. Pysh's chart?"  I still don't know where it was hiding, but they obviously found it.  I had a crazy thought that it would be so nice if just like my lost chart, my need for radiation would also get lost.  No such luck.

Finally, the radiation oncologist joins me in the room and asks, "So, you're done with the fills?".   He's a very laid back kind of guy who looks more like he should be climbing the side of a mountain than radiating cancer patients, but this does not impact my faith in him as a doctor.  I can't help but chuckle as I explain to him that if they fill me any more, I'm going to explode.  And on the off chance that I don't explode, I'm not going to be a very functional human being, I've already got serious challenges. I try to explain that me and the twins are going through some "growing pains".   He laughs at me and says, "So, you're happy with them?"  I can tell by the smile on his face that he's joking with me.  What else can we do at this point?  I would laugh about it, but I can't, it just doesn't feel right, so I will joke about it and take my chances that I don't feel the need to laugh really hard about my predicament, all the while praying that I don't sneeze.

I can honestly say that I have been impressed by the quality of my interactions with almost every person that has participated in my care at Florida Hospital. (With the exception of the bubble gum chewing bimbo that gave me chemo education- and she was just wrong on so many levels!)  I have never felt like a number, and I always feel like they give me their full and undivided attention- there's no rush to move on to the next patient.  Of course, I would like to think it's just because I'm special...  My radiation oncologist has done a fantastic job of settling my fears and concerns (and there were a lot of them... I had managed to come up with about 243 reasons why radiation therapy should not be in my future, or anyone elses for that matter.  Some of which I'm sure were new to him!) about radiation therapy, and I can honestly say that I am at peace with this treatment (This might be a good time to mention that my original radiation oncologist got all teared up and actually cried when I told her that I didn't think I could go through with radiation therapy!).  But, here I am, I am ready to go. Well almost.  There's some nasty business about some tattoos, and a pre-approval from my insurance company and of course the fact that I'm not cleared until August 1 to "GO!".

After I finished with the oncologist, I met my radiation team.  There are 3 gals that will be taking care of every aspect of my 33 (yes, that's how many times they're gonna hit me!) radiation treatments.  I have to say that while I was a somewhat modest person when this breast cancer business began, it no longer phases me.  I've stripped out of my clothes and put on a hospital gown that opens to the front so many times that I've lost count.  I've said it before, I'll say it again, if you wanna get flashed, you've got a pretty good chance with a breast cancer survivor- we just don't care.   I report to the radiation room sporting a beautiful blue (I chose it over the white, it looks better with my eyes and my complexion) hospital robe, open to the front.  Wouldn't you know, they don't want it open to the front, and the tech offers to step out of the room while I change it.  Ugh, just stay put.  Three people had already checked out the twins by that point yesterday anyway!

When they start marking me, it hits me just how much radiation I'm going to be getting.  I'm pretty sure it's enough to level an elephant or at least Stage IIIC breast cancer with lymph node involvement- left breast, right breast, left armpit, right armpit, and my chest bone: 20 minutes a day plus all of the prep and stripping that goes along with it.  (I am holding out hope that the radiation will cause permanent hair loss underneath both of my armpits- it seems like the least that I could ask for at this point.)  The whole process reminds me a little bit of my pet scans: a table that's as hard as a rock, and very weird noises.  The only difference at this point, my arms are propped above my head in a very awkward position, and my oddly displaced clavicle is digging into the board.  It is going to take serious concentration for me to hold still for 20 minutes a day in this position, and I've already decided that I'm going to practice for the next 2 weeks.

Believe it or not- I had a seriously good time with the radiologist!  She was a lot of fun, and we talked about 3000 different things as she worked to get done everything she needed to.  She's good at what she does because she managed to make me comfortable and forget that the reason that I am lying on this uncomfortable table is because I'm about to get radiated.  This is good, because when it gets frustrating to drag my ass over there every day for 6 1/2 weeks, I will be looking forward to seeing her and talking to her.

After 3 hours, I leave there with purple crosses all over my chest, my chest bone, and my torso.  I'm told not to scrub them off over the course of the next week. There are clear band-aids over top of them to prevent this from happening.   I will go back next week for my permanent freckles.  I didn't bother to ask how those permanent freckles are going to get on my body- it doesn't occur to me until this morning that there are probably going to be needles involved.  I think I'm over it.

My Brief Return To Old Normal

With the destruction of my little attempted murderers impending, I have been on an urgent mission to embrace anything and everything normal, because I know that my activity levels are going to be extremely impaired for what is going to seem like eternity.  I had to swear (although I don't think I convinced him, or that he trusted me) to my plastic surgeon that I would give him 6 weeks, that I would be a good girl and follow all of his orders for the 6 whole weeks. Actually, 2 weeks, until the drains are out, seems like a good compromise. (I did not agree to his request that I not leave the house during that whole time... can you believe he does not want me to even go to the grocery store? And I can't miss my 2 Herceptin treatments... and don't forgot about filling the new "girls" up.... I can't stay home for 2 weeks unless )

Thanks to my lemon, mint, cucumber detoxes, protein shakes and smoothies, and my intense workouts, the physical condition of my body has improved.  While I'm sure that there is still chemo lingering in the smallest crevices of my body, I'm thinking that I've managed to drink, walk, work a good portion of it out.  My legs feel much more like the legs that I started this whole cancer business with, actually thanks to Beach Body, even better.  I can now run up and down the stairs without thinking twice about it, and my energy levels are pretty fantastic for a woman who has just battled stage 4 cancer and 6 rounds of chemo.  I am constantly moving.  (Actually, I'm having a hard time sitting here to type this blog... I'm pretty wired!)  All of this has been very helpful in this whirlwind of activity that I have been embracing.  (I think the activity is keeping my mind off of my impending surgery!)

My cleaning mode has been activated.  In the last week, I have scrubbed and cleaned more than I have scrubbed and cleaned in the last 6 months.  I have basically been in maintenance mode for the last 6 months, running the vacuum and the steamer on the floors once a week, and just keeping up with the house, but it was time to get serious!  I was astonished by the amount of boxer fur that had gathered on the top of my baseboard... and drool.... I found myself saying at least 10 times, how the heck did that get there?  (Thank you Lucy & Duke for making your mama giggle even as she was removing drool from some very bizarre places!  God, how I love you guys!)  Removing boxer drool is not a challenge to be taken lightly, nor is it for the faint of heart, it usually requires insane amounts of muscle to get it removed from our textured walls!  I swear that stuff is part Gorilla Glue, and can always be found in a pinch when you need something to hold something together.

Last night, I met friends for dinner and celebrated my clean PET scan!  We talked for 3 hours about my cancer adventure, my plans for the future, and our boxers!  Last week, one of my girlfriends took the day off of work, and we spent the afternoon by her pool with her boxers.  I am so lucky to have friends that use a vacation day to hang by the pool with me!

And my big excitement for the week... I spent 2 days in the new Florida store.  Drum roll please.  This is no small undertaking.  Our single Florida store is 80 miles from our home (and requires a small amount of planning in order to make the journey: gas, food, water, coffee, laptop, printer, etc, etc, etc.).  The drive is so long that I had to stop twice for pee breaks.  Truth be told, I was a little nervous about the whole adventure.  But, I really wanted, and needed to do it.  It was very good for my spirit.... talking to customers, and just doing some of the things that were familiar to me felt great.... and the big sale I made this morning was the icing on the cake... I've still got it... the effects of that damn chemo brain are starting to fade.  My husband laughed at me when I said that I was excited to be going to work.  I told him that I feel blessed that I can go to work.... Seriously, I do!  I have loved that I have been able to maintain some of my roles in the business while I battled cancer, but I really missed the people.  Selling is really what I love to do...

So, now what do I do?  I've got 2 whole days left to occupy myself...  I feel a trip to Home Depot coming on.

Nor-mal

As cancer patients, we find ourselves holding our breaths very often.  The days and hours waiting for news are filled with anxiety and tons of emotions that range from panic to fear.  We hold our breath and wait to hear that white blood cell counts are "NORMAL".  We hold our breath and wait to hear that MRI's are "NORMAL" and we hold our breath and wait to hear that PET Scans are "NORMAL".  All we want is "NORMAL" even though our definition of "NORMAL" has been forever altered by a cancer diagnosis.

Thankfully, even in my altered mental state, I was not stupid enough to hold my breath waiting for the results of my PET Scan, because I most certainly would have passed out by now.  But, I finally got the call.  The call that I tried not to think about too much this week, because in my heart, I knew what the results were going to be.  Call it women's intuition.  Call it being smart enough to listen to what my body is telling me.  Or just call it being positive.

I knew when I saw the call come up on my phone, they weren't calling to remind me that I have an appointment tomorrow.  They were calling to tell me that the results of my PET Scan were "COMPLETELY NORMAL!".  I was just about rendered speechless, and could barely speak to the women through my tears.  Suddenly, everything came into focus.  It no longer matters that I'm retaining 20 pounds of water and my ankles look like they belong on an elephant.  It doesn't matter that all of my fingernails are falling off.  And it doesn't matter that my head is covered only in light blonde peach fuzz.  I'm just gonna put on a pair of long pants, paint my fingernails and put my wig on and celebrate this news.

I am cancer free!

Making The Tough Calls

When I was diagnosed, everything was pretty much laid out for me by the surgeon, I didn't feel like I had massive decisions to make.  There really weren't any choices.  I either started chemotherapy, or breast cancer would take my life.  It was one or the other, we didn't really even toss the idea of not having chemo around, it was never even a topic of conversation.  I remember the intense dissatisfaction over not having any choices, not having any kind of control over what was going to happen to my body, to my life.  In retrospect, I suppose with everything that I had to do to prepare for treatment, that I didn't have to make a bunch of choices.  I probably wasn't in any kind of condition to make them anyway.

Just like that, the next year of my life would be mapped out on a piece of breast cancer pink (are you kidding me?) paper, a piece of paper with not 2, but 4 nipples.  (Was this some kind of sign?  An omen of what was to come?  Should I worry that I will awake for reconstructive surgery with 4 nipples?  Heck, I was worried about having none, 4 sounds worse.)  It disturbed me just a little bit that the surgeon didn't even have to think about it, she just started writing and drawing little arrows around the 4 nipples. How many times a day does she get to draw on the pink paper?

The pink paper would be posted to the refrigerator by my husband later that day where it would continue to hang for the course of my treatment.  He told me that he wanted me to cross the steps off as I went so that I could feel like I was making progress.  (I need to mark a bunch of steps off right now... oops!)  Progress is very important when your life is at stake.  I remember wondering at the time if we would get sick of looking at that pink paper hanging on our beautiful stainless steel refrigerator, the constant reminder that someone in the house had something wrong with her breasts.

And so the pink paper/4 nipple plan began, tests, labs, and more tests would start the ball rolling.  .... And she's off....  Oncologists, Radiation Oncologists (how does someone who doesn't even have a PCP end up with 2 oncologists in a matter of days?), MRI's, Echo's, PET scans....  Port surgery.  Start chemo.  Finish chemo.  Back to the surgeon to schedule surgery.

...Radiation.  And there is where the snag comes in.  I do feel like I have a choice.  I am not 100% sold that radiation therapy should be in my future.  I have serious doubts and concerns about radiation.  Doubts and concerns that I raised to my oncologist a few months ago in the midst of chemo.  She told me that we could discuss it once I was done with the chemo.  Well, I'm done, and there is going to be a big discussion in her office on Friday when I go for my stand-alone Herceptin treatment.

I have put on my medical cap, and read through all kinds of studies debating the merits of radiation therapy in a case like mine, and I've got to say, I'm struggling big time.  (I know I swore off internet reading back in February, but I have to be armed and dangerous, I have to be educated in order to make the best decision.)

On one hand, I don't want to do anything that is going to make it easy for the cancer to come back or spread to other parts of my body.  I really want it all gone- which is why I have chosen to have the double mastectomy.  There is going to be nothing left.  On the other hand, radiation can actually cause secondary cancers.  So, aren't I contradicting myself with this choice?  I'm also very concerned about my bones, I tend to take after my father's side of the family, and the bones aren't good to begin with.  What is radiation going to do to my bones?

I do not want to die of breast cancer, or any other cancer for that matter.  But, I also do not want to spend the rest of my life battling side effects from radiation therapy.  I have a feeling that already I am going to be dealing with some bizarre side effects from the chemotherapy cocktail that I just completed.  (Note to self, probably should quit calling it a cocktail.  When have I ever had a "cocktail" that made my hair fall out and my finger nails turn black... seriously?)  I do not wish to live in a bubble in a constant state of panic over what I can and cannot do, that's not living.  I feel like my body has been through enough, and I strongly believe that there are healthier, less invasive options for killing off cancer cells... although, I must say, I think that I have made my body such a hostile environment for cancer cells, that I doubt that there are any of them still hanging around, they're probably long gone.

Wish me luck, I have a feeling that this isn't going to be an easy choice to make, and I'm not entirely sure how receptive to these feelings my oncologist is going to be.  Hopefully, I have a clean PET to back up my argument.

You're Never Fully Dressed Without A Smile....

Today was  PET Scan Friday. (My 1st PET Scan since completing 6 rounds of chemo.)

Yesterday, was Echo Cardiogram Thursday.

I  always make a point of reporting with a smile, and have always done my to make the best out of  pretty much everything my team of highly talented (and have I mentioned, FEMALE) physicians has decided to do to me!  The past 2 days have been no different.  Most of the medical professionals that I come across can tell some pretty horrible stories about difficult, ornery, and just plain rude patients.  I don't want to be one of those people- I like being a "club" member, but I don't want to be a part of that club.

The technologist that performed my echo yesterday said that she will always remember me because even the 1st time she met me, as I faced a 9CM tumor and chemotherapy, I was smiling.   She told me that she has been rooting for me, and was very anxious to see how things were going for me.  When I shared my news, she did a little woo-hoo and a very cute little dance (If that is not a ringing endorsement for smiling and being nice to people, I don't know what is!). I am of the opinion that if my health care providers are going to remember me, I want it to be because I was sweet, smiling and determined to kick cancer's ass- not because I have a horrible attitude and can't be grateful for anything.  After all, these people are contributing to my care, which is in turn saving my life, and heck, the more I get to know them, the more I genuinely like em!

I shared the waiting room with several people today as I waited to be injected with the "Incredible Hulk" dye.  One of them really made an impression and it was not a good one.  I'm not sure why she was there, I have no idea what was wrong with her, what I do know is, I wanted to smack the bad attitude right out of her. The rudeness started in the lobby.  Apparently, the amount of time that she was being required to wait, just wasn't acceptable, and she made sure that everyone in the waiting room knew that she was unhappy. (Well, hells bells- everyone here is waiting... what do you think you are?  The Queen of Orlando?) In the 15 minutes that I was unlucky enough to be in the room with her, I heard complaints about everything imaginable.  The room was too cold, there weren't enough chairs, the chairs were uncomfortable, the wait was too long... and on and on she went.  I couldn't wait to get away from her, and neither could her boyfriend who yanked her out of the room and told her in a very loud voice (why didn't they just stay in the room if he was going to scream?  Everyone in the room would have joined in a standing ovation) that he was sick of her bad attitude.  As I walked from the room for my PET scan, I couldn't help but toss her a huge, toothy smile, I fought back the intense desire to tell her to have a blessed day.  I heard her grunt and let out a huge sigh.  She probably wanted to choke me, but I just couldn't help it.  I really feel bad for the radiologist that was going to have to deal with her.

I have no idea what the results of this scan will be.  I do know that they have to be better than what they were in January, and I pray that they are clear, but either way, I know that I have made progress.  I'm not anxious over the reading of this scan.  I just have a feeling... and the last time I had a feeling, I was right.  This is gonna be a good one.

I am in a completely different state of mind today than what I was back in January,  as I sit here attempting to rid myself of my water retaining ankles and legs and the exhaustion that is being brought on by carrying around all of this water. (I swear I'm retaining so much water that I could fill a small hot tub should someone decide to tip me over and pour me out!  I feel like a little tea pot... )  I am sure that my chemo worked, I'm no longer frightened by the prospect of starting chemo, and I'm starting down the road to recovery from the chemo.  Mentally, I am in a very good place, I feel positive, I feel strong, and I feel like I've really got this.  I'm focused and I'm determined with little distraction.

The wait for that 1st PET to come back was terrible.  Once you've been told you have cancer, it's very easy for your mind to wander all over the map and get a little carried away, and you will inadvertently find yourself speculating on where else in your body the cancer might have gone.  Every little twitch, every little ache.  Oh my gosh, it's in my bones.  Oh shit,  it's in my ovaries.  Holy Fuck, with this headache, I'm sure it's in my brain!   So, as you can imagine, I was relieved to get the results back and find out that it was only where I had originally thought it was.  I know that I will have many more PET scans, and I know that every time I go for a PET Scan I will be anxious as I wait for the results to come back.  I'm nothing if not a realist, and I know that there is a chance that once of these days, I won't have a clear PET.  But, I refuse to be defined by this possibility, instead I will carry on with my life making sure that if that day does present itself, that I have no regrets about the way that I lived during my cancer remission.

Today, I have no expectations other than a clear report- while my brain is a little wonky, I don't think it's because cancer has invaded it.  And just because my bones are a little achy does not mean that cancer has made a home there...  I am completely devoid of horrible thoughts (other than the ones that I'm having about the water retention... have I mentioned that I'm retaining water and it's driving me bonkers?).  All I can think is, the chemo & I  kicked my cancer's ass.... Now I just have to wait and see how much ass it kicked!