Thursday, May 30, 2013

Gonna Fly Now

The first time I walked into the cancer center where I get treatment, I noticed the staircase.  It seems to loom over the entire first floor of the center.  I remember looking at that staircase, as imposing as the one in Gone With The Wind (only without the rad red carpeting) and thinking to myself "I'll never be able to take the stairs again."  Those stairs seemed as daunting as the stairs Rocky ran up during his training in the first Rocky.  No way I could do that.  I was so grateful for the elevator.

You see, I was so weak.  This was after 2 weeks of ascites building in my abdomen to the point I could barely breathe, and hardly eat.  After surgery a month before that opened me up wide and removed multiple organs - and as much cancer as they could see.  After weeks of nausea and vomiting and not being able to keep anything down.  After blood clots in the lungs and having to have TPN because I just couldn't eat much.  After losing 30 lbs - 7 liters of it ascites that was drained during my surgery - and much of that muscle strength.  The day after my first chemo.  I had to have my husband drop me off at the door to the center because I simply didn't have the strength to make the walk.

It was a scary time.

Since then, I've lost the nausea (as well as my hair), regained my appetite and my ability to eat regular meals, ditched the TPN and built my endurance back up.  But I was still taking the elevator when I went to the cancer center.  Those stairs still scared me.  The thought of only being able to get halfway up worried me - would I then have to go back down?  Or get help to go back down?  Or worse, have someone come get me to carry me the rest of the way up?  Those stairs are completely open to the main floor - as well as the 2nd floor - everyone would be able to see my humiliation if I failed.  So I just didn't try.

Not trying isn't usually my MO.  Yet the changes my body had been through affected me emotionally as well as physically.  And to be honest - I wasn't that brave a person to begin with.  Public humiliation has never been something I was willing to risk.

I tend to be a little more willing to step out there now.  It's like I figure what do I have to lose?  I've already lost my ability to have children (as well as the ability to regulate my body temperature - good lord a'mighty I'm tired of these hot flashes!), my appearance, hell - my modesty/dignity while in the hospital.  Does it really matter if I made a spectacle of myself?  Does it really matter if people can see my newly grown in silver hair?

Can I let them see me try and possibly fail?

Sure I can.  Last week, when I went to get my weekly blood draw, I took the stairs to the second floor.  I told myself I would take it slow and one step at a time.  I grinned all the way up.  I made it to the top, all by myself.  I might have heard "Gonna Fly Now" in my head while I did it.  I did manage to restrain myself from dancing around with my fists above my head when I got to the top.  Just barely.

Last night, my youngest brought a couple of friends over to the house.  I tend to be bare-headed in the house, unless we have company.  Last night, for the first time I didn't rush to the bedroom to grab a cap or scarf when I heard voices on the porch.  I just stayed in my chair as we watched the hockey game, and let the boys see my bare head.  And you know what?  None of those boys seemed to care that I was practically bald.  I may not quite be ready yet to go without my scarf at work, but I'm getting there.

One step at a time.

Thursday, May 23, 2013

Leap of Faith

After a west Texas spring that lasted all of 1 week, summer has finally arrived here in the boonies.  And that means it's time to garden.  We planted onions, potatoes and cabbage earlier in the year, but now it's finally warm enough to plant the warm weather veggies.  Tomatoes have gone into the garden at last, and in the weeks to come we will plant peppers, green beans, black eyed peas, cantaloupe, watermelon, squash, okra, cucumbers and of course - more tomatoes.

It may seem like a lot, but my husband and I love garden fresh veggies.  Right now we're in the midst of enjoying home grown asparagus any time we want it, and canning the extra.  Fresh green beans or black eyed peas are a treat that everyone should try at least once.  And oh my goodness, how I love home grown cantaloupe and watermelon.

I haven't purchased hot sauce in years.  I much prefer to make my own from home grown tomatoes.  Not to mention my Uncle James only speaks to me because I make him chow chow in the fall.  (Oh I kid.  He still spoke to me last year when I wasn't able to make him chow chow due to a lack of green tomatoes.  He said "where's my chow chow girl?" at Christmas. ;-))

I look at gardening differently this year.  For me, it's an act of faith.  I have faith that I will be healthy enough to take care of the garden while everything grows - weeding, watering, harvesting.  I have faith that I'll be healthy enough to enjoy those fresh green beans later this summer, and those home grown taters this fall.  Faith that I'll have the strength to can the extra harvest.

Faith that I'll be here.

There - I said it.  Once upon a time, not too long ago, I couldn't imagine trying to garden this summer.  There were days I didn't think I was going to ever get any strength back, much less enough to take care of a garden.  I'm still not all the way back - but I'm on my way.  I'm so grateful for that.  And even though it's been a struggle, and I still tire easily, I know now that it won't always be that way.  I know that eventually I'll be able to bend over and pull weeds without feeling like I'm drowning.

Until then - well - that's why I have children.

Tuesday, May 21, 2013

The Lost Girl

Trying to figure out what to blog about these days is getting harder.  Do y'all really want to hear more about my hair coming in almost totally gray?  Or what the doctor said about when my last two drain tubes can come out?  I could blog about how my chickens seem to have made it their mission in life to scratch the mulch out of my flower beds and eat my day lilies so they'll never bloom this year.  I'm about ready to put some frickin' chickens in my freezer if they don't leave my day lilies alone.   It's a good thing my husband put a cage around my newly planted bluebonnets, or they'd be roasted already.

The fact is - sometimes I feel like without the cancer, I just don't have much to talk about.  We had friends over for burgers and beer ( well - THEY had beer - I had burgers and cokes/tea), and I found that I spent a lot more time listening than talking.  More than once I thought about jumping into the conversation, but whatever I was going to say had something to do with my cancer, or its various side effects, and I didn't want to be the chick who is always talking about her cancer.  It's like I don't know how to make small talk without bringing it up.

Geez.  Might as well call me Debbie Downer if that's all I can talk about.

Yet the cancer is a huge part of who I am now.  I don't know how to leave it out of the conversation - but I don't want it to be my only topic of conversation.  I worry that my friends are getting tired of hearing it.  I try to make a joke out of it - using my ever-present scarf as my "excuse to get out of doing stuff" or a way to laugh it off when I use the wrong word (chemo brain!) or forget a date or something we've discussed.  Who am I if I'm not the chick who laughs at cancer?

Who am I indeed.

That's what I'm trying to figure out these days.  How to be the chick who used to have cancer.  How to chat with my friends about everything and nothing and not just about cancer and its side effects.  I used to be able to do that with ease.  But that was in the Before.  I used to spend long afternoons consuming chips and hot sauce and talking about nothing with my peeps.

Here in the soon to be After, I'm not so sure how to do that.

So if you happen to run into me in real life, and I seem quieter than I used to be, that's why.  My whole world has been wrapped up in cancer and treatment and side effects and fighting to get better, and now that I'm nearly at the end of that chapter in my life, I'm a little lost. 

It's just all a part of this new normal I guess.

Wednesday, May 15, 2013

What Partial Remission Means to Me

It's been a week since I blogged.

It's not that I haven't wanted to - trust me.  There are tons of things running through my brain these days.  It's just the weather has been wonderful, and my energy level is somewhat better, and I've been doing other things.  By the time I would want to sit down and write, the hubs had the laptop and I was out of luck.

I think I need my own laptop!

Despite how thrilled we are with my test results last week, we know that this isn't over.  I have an appointment tomorrow with the doctor who put my drains in for my lungs to see if he has any idea why I'm still having fluid build up around them.  It has gotten less in the last few weeks, but there is enough around my left lung that by the 3rd or 4th day, I'm short of breath.  I don't have any significant fluid around the right lung anymore, which is good.  My skin on that side is starting to react badly to the constant bandage changing every 3 or 4 days, so something is going to have to be done about that.

See?  I still have issues.  I'm hoping my platelets come up enough that my oncologist will feel comfortable with me having chemo in early June.  I feel weird knowing that right now I'm not doing anything to treat my cancer.  Then I have to remind myself I don't have much cancer left to treat.

It's strange, this partial remission.  Every time I feel a twinge or pain in my abdomen, or back or anywhere I wonder if it's the cancer getting worse, if the chemo isn't working anymore.  I have to remind myself that my scans were clear just two weeks ago.  And that just last week my CA 125 was at 26.  I'm ok right now.  The chances that I've had a tumor develop into a mass large enough to cause me pain in just two weeks are pretty low.  I'm ok.  I'm really ok.

I have a feeling - backed up by reading the stories of other ovarian cancer survivors - that I'll probably spend the rest of my life wondering.  I'm sure eventually I'll get to where every single pain won't automatically lead me to think the cancer is back, but it'll still be there.  With every gas pain, every weight gain, every time I feel short of breath or bloated - I'm going to wonder.  Because I know it can come back.  It can come back in two months - or two years - or twenty years.

I don't want to live my life in fear though.  I want to live it fully.  I want to take the time to spend afternoons with my family, evenings with those I love.  I want to fill my life with laughter and happiness, not worry and fear.  I have things I want to do - my "bucket list" so to speak.  But I wonder if starting to work on my bucket list isn't self-defeating - isn't that what terminal people do - their bucket list?

I'm just not sure how to navigate this partial remission chapter of my life.  There's no guidebook for that.  No educational binder with tips on how to navigate life at the end of treatment.  I still don't have my energy level up to where it used to be, nor my endurance.  I worry that people around me think that because I'm in some type of remission, that my battle is over, and that I'm well now.  When I'm not - I still have a way to go before I'm back to "normal."  If I ever get there - my normal may be different now.  So I don't know when I'll be able to keep my house clean.  When I'll be able to go and do like I used to.  Hell - I don't even know when I can have an adult beverage again. 

But even with all that confusion - it's better than the alternative.  I'm alive.  I'm beating cancer.  I'm surviving.  I'll get everything figured out eventually.  Hopefully my friends and loved ones will be patient while I find my way.

And if they don't?  Well - too bad for them, eh?  They're going to miss a whole lot of fun when I get it figured out!

Wednesday, May 08, 2013

Celebration Now - Come On!

 (There's a party going on right here - a celebration to last throughout the year....Celebration time - come on!  - Kool & the Gang)

Today is a good day.

Wait - actually - today is a GREAT day.

This morning, my oncologist told me that my scans were clear.  There is no evidence of tumors in my pelvis, abdomen or chest.  Except for some remaining fluid around my left lung - I am cancer free.

Cancer free!!!!

When I started this journey last October, I had no doubt that one day I'd say those words.  What I didn't realize is how I would nearly burst into tears when I heard them.  Or that I would grit out the words "Yes yes yes!!!" when I heard them.  It was just like winning a competition.

Make no mistake.  I know I haven't won.  Not the war anyway.  Ovarian cancer is insidious - you can be in remission for YEARS and have a recurrence.  I'm realistic about that.  It wouldn't surprise me if I have a recurrence in the future.  I'm prepared for that if it happens.  But I just won a battle.  A big freakin' battle.

And damn.  It feels AWESOME.

So - get out there and enjoy today.  I know I am.  While I still have that damn fluid to deal with, it's less.  I'm in "partial remission."  The chemo worked.  I'll most likely have another chemo treatment in a month - my platelets are very low and my oncologist wants to give my body some time to recover.  But for today - everything is rosy.

Take that cancer - you bastard.  I said you wouldn't beat me.  HA!!!

Monday, May 06, 2013

Letting My Light Shine a Little

Yesterday, I skipped church.

One thing I haven't talked a lot about is my faith and where it all fits with this cancer journey of mine.  The fact is - I 've always been one of those folks who figured my relationship with God was ... well, between me and God.  I've never been one of those who wishes everyone a blessed day, or beat everyone over the head with my particular brand of religion.  I'm just not geared that way.

I was raised in a variety of religions.  My mom was a Methodist who married a young man who wanted to be a Southern Baptist preacher.  Although he decided when I was a baby that ministry wasn't where he wanted to spend his life after all, we still went to Baptist churches for a significant part of my childhood.  At some point, he and my mother decided they weren't happy with the direction the Baptist church was taking them, so we began our family's search for something else.

It was an adventure, let me tell ya.  From the big fancy church where ladies in high heels and exquisite hairdo's danced in circles and the preacher ran around the sanctuary hollering "The King is coming!  The King is coming!" to the little hippie church that you got to by going down an alley near Mid-Sized University and in the yellow door then up the rickety stairs with earth mama types nursing their babies, candles in wine bottles everywhere and singing Kum ba ya....we tried 'em all.  In the end, we ended up going to a non-denominational church.  It had a little of the raising hands in praise, a little speakin' of the tongues, and a little of the newer gospel songs that were being written left and right in the 70's.  (Am I the only one who's childhood soundtrack includes the songs from "Come Together"?  And I don't mean the Beatles song.)  It was different from what they were raised in - but it touched their souls.  They felt God there....and they taught me that's where you go to church.  Where you feel God.

My husband and I have tried a few different churches in our life together.  But I never found one that really touched my soul until we started attending the Methodist church in Hicksville.  It's different from what I was raised in - but it touched my soul.  I found a place that soothed me in a way I didn't even realize I was missing until the first service I attended and they sang the doxology.

It may not be for everyone, but it works for me.  And that's kind of how I view religion.  There are so many different flavors because we're all so different.  What speaks to me may not speak to you.  My husband attends the same church I do, but for him, where he really feels God is out in nature.  I'm good with that.  I know he attends for me, but if he doesn't feel like going, I don't hold it against him. 

I believe in God.  I believe that He's helping me in this journey.  I believe He hears the many prayers that have been said on my behalf.  I believe He doesn't care where those prayers come from - whether its from the Methodist church, or the Baptist, or the Church of Christ, or Catholic or Pagan or the church of williewonkas.  He just hears the prayers.  Knowing that comforts me.  I'm not asking that it comfort you - unless you also believe.

And if you don't?  That's cool too.  I'm not a big believer in assuming my spiritual path is the only path.  There are many paths - and I think they're all valid.  Your mileage might vary.  

I skipped church yesterday because my son had a friend spend the night, and we were all up late.  I don't think God holds that against me.  I think He knows my heart.  He knows this week will be a tough one for me as I wait to hear my CT results.  I think He's holding me up.  I know having my faith helps keep me strong.

And that's all I'm going to say about that.  I hope your faith - in whatever you choose to believe in - keeps you strong as well.  I hope it soothes your soul in some way.  I hope it gives you peace.

Most of all - I hope it makes you feel as loved as it does me.

Saturday, May 04, 2013

Saturday Musings

Today, I made the brave decision to thin out my clothes.

You've been there - that moment when you realize it's time to let go of those pants you'll never squeeze your butt into again, that cute pink skirt set that is 10 years out of style, your period panties.

Oh come on.  We all have 'em.  And some part of us is looking forward to that day when we no longer need them.  For me, that day is now.  I have no more lady parts, so I have no need of period panties.  Boom - they're gone.  I also pulled out my big knockers bras.  It seems when you lose 25 pounds, you lose at least 5 pounds of that in your boobs.  Poof.  Gone.  So...I pulled them out of my bra drawer, but I put them into storage.  Because let's face it - I come from a long line of big boobed women, and it's entirely possible the boobs may be back.  And big knocker bras ain't cheap.

I'm still avoiding my tshirt drawer.  I have the hardest time getting rid of tshirts.  But I've got to do something about that drawer - I can barely close it now, and I just got a new Regionals track tshirt to wear.....

Ok - I have a problem.  And instead of dealing with it, I took a break to rest and discovered a Glee marathon on Oxygen and well....that tshirt drawer and the top of my closet just might have to wait until tomorrow.  You can't ask me to ignore a Glee marathon.

Tonight we're going to go celebrate a friend's birthday.  I'm trying to decide if I should take a few cokes to drink while I'm over there, or a couple of tea bags.  Since I don't know if I'll be on chemo again this coming week or not, no beer for me.  I miss beer.  I really miss those adult beverage pouches.  Stupid cancer.

Basically, for the most part I've just had what passes for a normal day around here.  And you know what?  Sometimes that's all I need.

Here's hoping you have a normal day today.

Friday, May 03, 2013

When To Let It Go

I've been back at work over a month now.  Since I work at Mid-Sized Big 12 University, we're coming up on the end of the spring semester.  It's a busier time, but not the busiest.  It's a time of gathering data and doing evaluations, and taking stock.  So that's what we're doing.

You know what I've discovered?  I'm a control freak.

When I was diagnosed last fall, I went from working full time to being incapacitated in about 2 weeks time.  Suddenly, my work place had to handle the things that I normally do.  Unfortunately, while I had been working on training my staff on many of the things I do, I hadn't gotten to things like reconciling accounts, how to run financial/personnel/budget reports or how to just handle everything while I was gone for an extended period of time.

Basically - I threw them into chaos without a rope.  I'm not happy about this.  I spent a lot of time during my recovery worrying about my department.  They did the best they could and found ways to divy up my job duties.  And they figured it out and managed.  Of course.

But now I'm back.  And I'd like to have my job back.

I do in a way.  Some of my job duties I've already taken back over - thinks like reconciling accounts, and procurement cards.  But there are a lot of my duties that other staff members are doing and my natural reaction is to want those duties back.

But is that what is best for my department?

I realized today, when I came across yet another thing I used to do is being handled by one of my staff.  My first reaction was to want that thing back.  Then I stopped and thought about it.  Is it absolutely necessary that I have that particular job duty back?   Am I really the only one who can do it right?  Or is it something that someone else can handle just as well? 

Let's face it - scheduling rooms isn't all that complicated.  There's no reason someone else can't do that.  I just didn't realize she was still doing it.  I just assumed that now that I was back, everyone was sending their requests to me.  Apparently not.  So I'm trying to let go of that task.  I'll have to sit down with her and make sure that she's getting the right information to do it, and sending the correct responses to requests, and that she's sticking to first in first out....but then I'll have to let go.

Boy - that's hard for us control freaks. 

Yet it's what I have to do.  Some things I need to let go of.  Just like letting go of my hair,  cleaning the house, my expectations of what my life was going to be like.  I just have to learn to let go.  To accept that some things can be done just as well by someone else.  That I'm not irreplaceable. 

Hmph.  This is hard!  I want to stomp my feet and do everything I did before.  I don't like giving up control.  And I feel like I have so little control left anymore.  I feel like if I give up too much...I'm giving up all together. That I can't do.  So I have to find a balance between what I can do, what I want to do, and what is best for me to do. 

Task by task, day by day, figuring out what to keep and what to let go of.  Not just at work but at home, in life in general.  It's what I try to do with blog - work through this new normal.  Figure out what is worth hanging on to, and what needs to be let go of. 

Thanks for joining me for the ride.  It won't be the smoothest ride, and my daddy tells me it can be hard to read.  But I'm trying to be transparent - to not gloss everything over.  I'm not just writing for me, but also for you, newly diagnosed ovarian cancer patient.  I want you to know that what you're feeling is normal, and we all go through it.  I also write for you, caretaker of the cancer patient, so that you know what your loved one might be going through, and why they think some of the things they do.  And last but not least - for you, beloved friend, family or aquaintance.  So that you can understand who this person is that you reached out to over last six months and know that your efforts weren't wasted.

Y'all just let me know if I start sounding pretentious, ok?  I don't want to sound pretentious.  Because as we all know - an ounce of pretension is worth a pound of manure.....

(Hey I never promised to be classy!)

Wednesday, May 01, 2013

Braaaiiinnnsss.....I Want Braiiiiiinnnnnssss....

Yesterday was a good brain day.

Since I started treatment, I don't think as well as I used to.  I used to be pretty sharp.  For the first few months after my surgery, I was on so many medications, my brain was a  little foggy.  It was hard to concentrate.  I didn't really read anything but Facebook posts for over two months.  For me, that was beyond weird.  I'm a reader.  I was always reading a book or magazine.  It took awhile before I was able to concentrate well enough to read magazine articles.  Then I worked my way up to "fluff" novels - the kind you don't have to think too hard with - no complicated plots to try to remember.  I finally worked my way up to the Game of Thrones series - then I knew I was ready to go back to work.  Try reading those books back to back and keep up with who is doing what to whom.  That's a pretty good sign your brain is working again.

Since I've been back, one of the things I've struggled with is concentration.  Most days I do pretty well.  But every so often - usually within a week or so of chemo, and certainly the days right after chemo - I have a foggy day.  A day where if a faculty member asks me a question, I let them know that I don't know, but I'll look it up.  I know I won't be able to look it up that day....most likely if I happened to remember where to look it up, I might not understand it fully anyway.  I've actually put off doing a project for my boss because I knew it was one that I needed a sharp day to even understand what she wanted....and not every day is a sharp day.

It's frustrating.  I had heard of chemo brain during my treatment, but actually experiencing it is unsettling.  Sometimes it's just taking longer to figure something out.  Sometimes it's searching for a word.  Sometimes it's using the wrong word.  And sometimes it's looking at a form you've completed dozens of times and thinking you're doing it correctly, then having it come back with instructions on how to do it right.

Yeah - that's embarrassing.  I'm sure folks in other departments around campus are getting annoyed at getting screwed up stuff.  It hasn't happened *alot* - but the fact that it's happening at all bothers me.  So - I look up directions on how to do stuff that I used to not think twice about.  I make my to do list more often.  I go through my email even more often to make sure I don't miss deadlines.  I try to remind myself that it's all part of the process - the process of getting better, of recovery.  And it won't be this way forever.

This morning I had CT scans to see where we are at with my cancer.  I've had the 6 carbo/taxol chemo treatments that are the standard front line of care for ovarian cancer.  I still have some fluid around my lungs, so I don't expect to be considered NED (aka  - no evidence of disease) just yet.  But I'm optimistic that I'm close to that.  That my cancer has responded well to chemo, and maybe I just need one or two more treatments to finish it off.  I'll find out next Wednesday.  Y'all keep me in your prayers until then.

Now - for something non-cancer related!  My youngest son J competed in the District/Area track meet for his school a few weeks ago - and placed 2nd in District and 4th in Area!  We are so proud of him.  This qualified him to go to Regionals for the first time.  That was the goal he had set for himself, and I'm so glad he reached it.  Unfortunately, he had a bad day throwing at Regionals - nerves I guess.  But next year he'll be a senior, and he has this experience to learn from. 

If I haven't mentioned it before, we have a cow and chickens on our place out in the boonies.  Currently Steak (our cow) is off at my cousin's place meeting some boys.  We're hoping she's playing the hussy and getting herself knocked up.  Ha!  Maybe once she's had a calf, I'll change her name to Lactation.  (Yes - we're terribly inappropriate in our naming of livestock. We are rednecks.  We don't hide that.  We wear it like a big ole badge!)

I'm currently considering names for the chickens - right now, Fricasse, Parmesan, and Korma are my favorites.  Let me know if you have any suggestions - I've got 13 chickens to name - 3 of 'em roosters. 

It looks like we're expecting yet another freeze tomorrow night.  I have 8 tomato plants that are trying to find a way out of the house.  And I'm about ready to hunt down Mother Nature and provide her with some damn Midol because seriously?  It's May.  There is no need for this freezing crap in May. 

See?  Life goes on.  Even with cancer.  In SPITE of cancer.  Because that's the way it should be.