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?

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.

Go! Get Out of Here and Stay Out!

Today was a day of bittersweet good-byes.  The place where my journey with cancer started, the place where I heard those 3 terrible words (YOU HAVE CANCER) for the first time, also became the place where my cancer ended, because technically, I am now cancer free.

Today I met with my breast surgeon, and her team for the very last time.  I felt like she was breaking up with me as one of the girls handed my envelope of films.  I was told they're a souvenir, and they are, they are a reminder of what I just fought.   She reviewed my amended (yes, there were errors) pathology report and smiled from ear to ear as she told me that she got it all, and that she couldn't have been more pleased with the results of surgery and chemo, checked out my surgery site, gave me a huge hug and then she said to me, "Go!  Get out of here, and stay out!  I don't wanna see you back here!  (One of the things that I really loved about my surgeon was her sassy, kick ass attitude, and it came out again today as we said our good-bye!)  And frankly, as much as I adore Dr. Kemp and her staff, those words were absolute music to my ears.  I couldn't be happier to be here, in this spot, right now!  I've still got a long way to go (there's the boob-less issue to take care of, and the 6 weeks of rads to kill off any pesky lingering cells, and my remaining 9 Herceptin treatments, but after all of this other business, that ain't nothing!)

I also parted with 2 of my drain tubes today.  Those, just for the record, were not bittersweet good-byes.  But for those of you who endure this after me, just know that having drain tubes removed is absolutely, positively nothing- I swear!  (As is my usual protocol before undergoing any type of procedure, I did a Google search yesterday to find out what  I was in for as far as having those tubes removed.  One survivor wrote that it was so bad she couldn't stand it, and recommended that you should take pain pills 1 hour prior to the appointment.  So, I was a tad nervous about how it was going to feel, but I didn't take the pain pills.)  I still have 2 drain tubes to contend with for another week, but on a positive note- I have been cleared for physical therapy type exercises on my arms and shoulders.  While I have a pretty good range of motion right now, there are a few things that are pulling and that feel a little weird.  I'm hoping these exercises take care of that- because when I go back next week, they're going to start inflating me... look out!

The past 10 days have been a little long, and more painful that I was anticipating.  I had to remind myself at least 100 times that this is temporary, and that pain is weakness leaving the body; believe it or not, that really helped me to think of it that way.  I've obviously got more to do to be recovered, but I'm definitely making progress, however slow it may be, and that is what will get me through this!   There were challenges that I wasn't ready for, but then I am not a person who handles slowing down and taking it easy well.  It's just not in my nature to be incapacitated.   But it is definitely in my nature to adapt to whatever situation comes way, and that is how I survived the last 10 days.  And this house arrest bullshit- is going to make me crazy.

However, I made it, and I'm moving on to the next phase... I survived the surgery, and the rather uncomfortable days following it.  And, my sense of humor is still intact... see?  (If I obey the house arrest rules, there may be a lot more pictures like the one on the left!)

There Will Be Good Days, There Will Be Bad Days, And There Will Be Days From Hell

Sunday and Monday, those were good days.  Sunday, I spent the day hanging out with the hubby and the boxers, enjoyed the sunshine (from an adirondak chair that I got stuck in and had to be tipped out of.  It is impossible to get out of an adirondak chair without using your arms- it doesn't matter how strong your legs or abs are!) and had some delicious Mexican food for dinner. Even though sleep does not seem to be my friend right now, I had a great day.  At this point, I feel blessed to grab 3 or 4 hours and call it a night. It's just too hard to get comfortable.  This may sound strange, but I am dying to curl up in a little ball.  I'm sure that if I tried hard enough I could accomplish it, but the pain of getting out of the ball would probably kill me.  And I really miss dreaming, I can't remember the last time I had a good dream. Funny how we miss the little things.

Monday was another great day, I was full of energy, and feeling very productive.  I did payroll, followed up on a bunch of loose ends and ordered everything that had been pending in my absence.  I drove for the first time since surgery!  And I cooked a fabulous dinner.  I really felt great.  My mom and I took a long walk around the lake.  She's captivated by the bald eagles nests around our development, and a large turtle that she claims is fast moving, but that I have yet to see.  (That reminds me, I need to take my camera down there and see if I can get a good shot of the eagles.  They look so beautiful up there!)  I felt pretty much normal, I actually felt good.  Of course, by Monday evening, I was exhausted and there just wasn't much energy left in me, but I can deal with exhaustion.  I wasn't in pain, just a little bit uncomfortable and tired.

Yesterday, Tuesday was the day from hell.  I didn't even get a warning day, I went straight from feeling amazing to feeling like I was in hell.  (Which was probably punishment for everything I did on Monday.  Just a guess but it was obviously way too much!)  Let me just say that I think there are some things that are of such great impact, and so scary, that they really deserve a mention during pre-surgery consults.  I am talking about my tissue expanders.  Because nothing was ever mentioned to me about how they would feel, I was expecting them to be silent, un-noticeable guests in my body.  I woke up yesterday morning completely unable to catch my breath.  This went on all morning, it was accompanied by a tightness in my chest, right where the expanders are.   I felt almost like I had just run a marathon, the feeling would not leave me.  I almost wondered if I was having a heart attack, but all of the pain was on the right side, and I'm pretty sure my heart is on the left. Turns out this is a known issue with the expanders, some people don't experience it, but most do.  Whew, that's a relief, I thought I was dying.  I've said it before, and I'm sure I'll say it again many times before this is over, as long as I know what to expect I can deal with it.  It's when I'm blindsided, and therefore unprepared that I have issues.  I'm guessing that if they told patients that they were going to feel as if they couldn't breath for 6-8 months, it would be a bit of a deterrent.

As if that wasn't enough of a complication, I discovered another one yesterday, and it's a big one.  I can't laugh.  Well, I can.  But, it-is-excruciatingly painful!  And sneezing?  Holy hell!  I sneezed last night and the pain was so bad, my mom thought I was going to pass out (frankly, I was a little suspicious myself).  I am hoping that these issues are what I would call post-surgery issues that after a few weeks, as my body heels, will disappear.  It's really  going to be a long 8 months if I can't laugh.  I really rely on giggles to get me though the tough spots... and sneezing, well I do that all the time.  My mother decided that all I need to do is grab a pillow and hug it to my chest before I cough or sneeze.  It will work out perfectly as long as all of my giggles, sneezes and coughs come with a 5 minute warning.

Tomorrow I go for my 1st post op doctors appointments.  I will be saying good-bye to 2 of my 4 drains.  There will probably be tears associated with the removal of the drains, but they won't be tears for the drains departure from my body.  I get why I'm not allowed to go out in public.  I have 4 large drains that are attached to my stomach.  I look like an armed terrorist.  Hopefully, 2 of them will be a little more manageable, and a lot less noticeable.  I was hoping that more of them were going to go, but when I called the doctors office the other day, she told me 2 at the most.... boy was I disappointed!  All of that monkey business will be followed by a visit to the other surgeon for a review and an explanation of my beautiful 3 page pathology report.  I've tried my damnedest to interpret everything in that report, but there are words in there that are bigger than my hand, so I eventually gave up.  I look at it this way, she's getting paid the big bucks, might as well let her figure out how to explain it to me in a way that I can comprehend.

Today is should be better than yesterday, I got a decent night of sleep, and  my breathless feeling from yesterday isn't present yet this morning.  As long as I can get through the day without laughing, sneezing or coughing, I think I will be okay.  (Damn, see this is what I was talking about when I kept telling my doctors I was concerned about quality of life after treatment...)

This is Temporary. This is Temporary. This is Temporary.

So, day 2 (Wednesday) goes off without a hitch.  I am pretty much blissfully ignorant to any kind of pain within my body, I am uncomfortable, but for the most part numb.  I can handle it.  Every 3 hours, I grab a Percocet and drift back off to sleep.  I hate pain meds, they make me dizzy and I don't feel very stable.  I've never liked taking them, but I've been lectured about this.  I have to take them, and it's better for me to take them before the pain gets too bad.  So, I take the pain pills.  Getting in and out of bed, or out of a chair is extremely challenging and sends waves of pain through my upper body.  If you've ever tried to get up off of a toilet seat without moving a single muscle in your upper body, you can imagine the challenge that I faced. Go ahead, give it a whirl... (I'm not necessarily sure that advising a recent mastectomy patient to guzzle as much water as possible is the best or most relative advice.  While I understand the merits of the advice, it presents huge challenges.  If it didn't hurt so much to laugh, I would most certainly be laughing at this predicament that I've gotten msyelf into!  So, for now, I will make a mental note, and I will definitely have a good chuckle out of this at a later date.)  There is a positive to all of this crazy mastectomy business, I got flowers!  And they're absolutely beautiful!  (But, no, I wouldn't do it all over again just for the flowers!)

Day 3, is different.  It is easier to get out of bed, and a chair.   I'm not sure if this is progress or if I've just learned how to do it without making those horrific waves of pain shoot through my body.  My legs and my abs are definitely my friends in this situation, and the more I use them to do stuff, the easier my life is.  I still get stuck on the floor, because I forget that I am like a wounded bird without a wing and trying to fly just isn't an option.  But, I am used to being on the floor with my dogs and I forget...This situation, I cannot help but laugh at.  Mommy did an "oops" Lucy, and before I know it, she's wiggling all over the place, and I'm laughing even harder.  Huh, amazing, isn't laughter supposed to dull the pain?  Percocet is still my friend, and the numbing that they gave me at the hospital is starting to wear off, but I still know it's there. because I can't feel my armpits, talk about a weird sensation.  I had a long blissful shower on morning 3, after sleeping 2 nights on my back and straight up, this felt like heaven.  I didn't have a ton of bandages, but those are all gone now, and all that's left is this impossibly sexy sports bra.  As I was getting out of bed this morning, I had 2 hot pains, one left and one right.  These pains will revisit me every time I get out of bed, no matter how much much I use my leg and lower back muscles to pull me up, I am suspicious that these have something to do with the drains.

Day 4, I am a woman on a mission.  I must go to Orlando for my Herceptin treatment.  If I miss this treatment, I won't finish my Herceptin by the end of the year.  Besides, it's on the calender. Little do I know, there is great news waiting for me in the oncology department.  I definitely am feeling stronger today than I did yesterday.  Getting showered and dressed still isn't a barrel full of monkeys, but it's easier than it was yesterday, and every day, I get better and better at balancing like a circus act on one leg to put my pants on.  The ride to Orlando is torture, I am not a very good passenger, and my mother does not like driving in traffic.  Despite the fact that the GPS is programmed with step by step instructions, she still has no idea where she's going, it's like she is oblivious to the GPS.  I could have driven myself, I hadn't had any pain meds for at least 8 hours, but there's this nasty business of raising my arms too far before pains start shooting all over the place. (Just in case I've forgotten, however temporarily, that I've just had a double mastectomy and lymph node removal!)  I am pretty sure the steering wheel would have been just "too far".   

So, we make it to Florida Hospital.  Oh how I hate the site of this building.  Of course, I associate it with chemo therapy, and there isn't much about my memories of chemo that give me warm fuzzy feelings (except for my chemo friends of course).  On a mission to the bathroom, I run into my oncologist in the hallway who is shocked that I just had surgery on Tuesday and am standing in her office on Friday.  She asks if I've seen  my pathology report?  Pathology report?  Me?  No!  Bring it on!  My pathology report is 3 pages of great news, or at least that is what she tells me.  It's clean.  Everything is clean.  There is no cancer left in this body!  (I guess my Dear John letter really got to him!)  As I mentioned it's 3 pages long, and I'm not sure what most of it means, I will wait for the surgeon to go over all of that with me on Thursday, but for now, this news make the pain even more tolerable.  Actually, I managed a little dance, I just had to do it!  This is big!  (However, I probably won't be dancing again for a little while...)

On my way home from the oncologists office, my Cigna Case Manager calls.  I have a love/hate affair with this woman.  She never seems to call at a good time, I'm always in the middle of something, or there is always 15 things going on.  And I don't know for sure, but I suspect she is either a victim of dementia or chemo brain, because she always asks me the same question over and over until I just want to scream.  Friday was no different.  Oh, and did I mention, she's always on the hunt for complications.  She just asks over and over again if I have any complications. I view this as negativity and it makes my skin crawl.  Can't she just be happy that I haven't turned green?  I understand that she's just trying to help, but I've got a ton of doctors, and if I do have complications, rest assured I'll be calling them before I call someone sitting behind a desk 1000 miles away- that's why they're getting paid the big bucks!

Day 5, like an idiot, I decide that I am going to be brave today.  I decide that I am going to go pain med free, I just don't feel like I'm in the mood to be dizzy and disoriented all day long.  Where do I come up with these insane plans?  Must be residual effects of chemo brain that are making me take such idiotic courses of action.  Actually, it was not so bad.  I was highly functioning, but pretty damn uncomfortable, all day yesterday, which made me feel good (the highly functioning part).  I still have all of the same issues, but they're definitely getting better.  I do however notice that the back of my left arm is completely numb including my funny bone.....why do I suspect that the fun is just getting started?  My hardest time of day is changing out the drains.  For some reason, the suctioning hurts like hell, I can really feel it.  I am hopeful that these drains will be gone on Thursday at my post-op appointment.  Every day, there is less and less in the little bottles.  I have a feeling that I will feel a lot better once the drains are out.  There are 4 of them, constantly present and digging into me in weird places.  I made it until 8:00 last night without a Percocet.  Then it just couldn't be avoided, I knew I wasn't going to get a wink of sleep if I didn't take one...  

My cancer buddy asked me if the mastectomy was worse then chemo.  As painful as this has been, and will probably continue to be for several weeks, chemo was worse.  Chemo took over my whole body and just made me feel constantly crappy for 18 weeks, maybe even longer.  This is just pain, isolated pretty much to one spot in my body.  And while I can't do most of the things that I'm used to doing, I know that this is very short term, and that I can deal with it.  As long as I'm noticing even just a little bit of progress every day, I will be okay, I can do this.... I just keep getting closer and closer to the light at the end of the tunnel!