Pretty Women

The first time I saw this, it overwhelmed me.  It was long before I was diagnosed, before I had to re-evaluate my own self-image as I have had to over the last 14 months.  But the message that Katie Makkai shared at the National Poetry Slam in 2002 was one that literally brought me to tears.

(And this was in the days before my hormones got all screwed up and I started weeping at unexpected moments and at any and all vids or commercials that include servicemen coming home to adoring children.  Jeez - that stuff gets me every time.)

I don't have daughters.  I had always hoped that my brother would have nieces for me - little versions of me with a bit of Russian thrown in from their mom.  It only seemed fair, as my eldest was the spitting image of my brother as a boy - and my youngest certainly had moments that reminded me of my brother as well.  But no - he had to go and have a boy as well.  Hmph.

Katie's message isn't just for the young women who are starting to find out who they are - and what they are pretty amazing at.  It is for all of us.  I hadn't thought about it in years, but a week or so ago, a friend from Austin posted a picture from Katie's performance with a good portion of the conclusion on it, and I remembered.  I remembered the gut reaction I had to it - so I had to go find it and watch it again.

Since then, it has come to mind in odd moments.  Such as this evening - when, as I was in the bathroom, I once again caught a glimpse of my latest self - head covered with a few wispy hairs, eyes with just a few eyelashes left and dark circles that look like some one slugged me three days ago.  I caught myself wrinkling my nose at my reflection thinking "well ain't that purdy" and heard an echo of the video above.

Will I be pretty?  Will I be pretty?  Will I be pretty?!!

Well hell.  I thought I had gotten past all that.

The thing is, it's hard to let go of vanity.  It's no wonder it's listed as one of the deadly sins - once it gets a hold of you, it doesn't want to let go.  I would love nothing better than to not glance in a mirror and start picking apart how I look now.  To not give in to that ritual of self-loathing that anorexic Victoria's Secret models with D-cup jugs have bequeathed to those us not blessed that way naturally (or monetarily). 

Some day I might have granddaughters.  I hope like hell at some point - if I'm not around to do it - that someone points them at Katie's performance above.  I wish for them a society that reveres women that have talent, intelligence and a willingness to work hard instead of those with nothing but a sex tape in their past and a willingness to do anything to be "famous" in their present.  I hope that my sons - and their wives - don't focus on them being merely pretty, but instead encourage them to be "pretty intelligent, pretty creative, pretty amazing."

But never. Merely. Pretty.

(All the credit in the world goes to the amazing Katie Makkai, who inspired this entire post and I don't know at all, but I consider an inspiration for myself - and I hope for you as well.  She is, quite simply, one of my heroes.)

I'm Sure I Don't Know WHAT You're Talking About

There are times in your life when you have to hear what I like to call "hard truths."  These are usually things you don't want to hear - either about you, or your job, or your friends, or your life, or whatever.  But they are truths that for whatever reason, need to be said.  You need to hear them.

It's never easy to hear these hard truths.  Often when you hear them, you react with anger or denial because who wants to believe something unpleasant?  Rarely are hard truths pleasant to hear - if they were, they wouldn't be hard.  It often takes a long time to absorb what you've heard.  Sometimes your denial is so firm that you won't even accept that what you have heard is a truth.  Denying it only hurts yourself, but we humans rarely want to hear - or  believe - the bad stuff.

When I finally found out that my cancer was Stage IV - that was a hard truth.  I didn't want to believe it.  After all - as soon I noticed my bloating stomach, I went to the doctor.  I had the tests run.  Surely it had been found early?  I didn't have the run around that so many ovarian cancer patients have - fighting to find a doctor that will take their symptoms, their feeling that something wasn't right seriously.  Many of them spend months or years begging health professionals to figure out what is wrong.  It's no surprise that after all that time they are diagnosed at Stage III or IV. That shouldn't have been my case, but it was.

After finding out what stage my cancer was, I did what most of us do these days - I googled it.  The statistics were terrifying.  At that point I had to accept another hard truth - I most likely would never be "cured" of ovarian cancer.  I might get to remission some day, but I would spend the rest of my most likely shortened life fighting cancer.  I should start viewing it as a chronic disease because I would never be free of it.

Ouch.  That sucked.  That's not what's supposed to happen with cancer these days, is it?  No - you're supposed to be diagnosed, have surgery/chemo, and then go into remission.  After 5 years of remission, you're supposed to be cured.  That's what so many of us that that haven't been diagnosed think.

Uh - no.  That's not how it works for a lot of cancers.  Including mine.  So I had to find a way to accept another hard truth.  I didn't like it - the truth or having to find a way to accept it and absorb it and to change my way of thinking - but I did it.  Because that is what we do as mature adults. 

I've tried to find ways to learn and grow from every hard truth I come up against.  While my health issues are the hard truths I've dealt with the most lately, I've also had to do it for hard truths at work, and with my family and friends.  Sometimes it just takes a little pouting, and ranting before I take a deep breath and start to get down to the business of processing this new knowledge.  I've tried to teach my boys the art of accepting hard truths - they're younger, so of course it's harder for them.  But I think it's important we *all* learn to hear hard truths - and to learn from them.  To not just immediately discount what we're hearing because we don't like it.


You can't tell hard truths out of meaness.  It has to come from sincerity - otherwise it's just being petty or hurtful.  You shouldn't say a hard truth unless you truly want to help that person.

(It also helps if you wait until they ask.  Blurting out a hard truth out of nowhere isn't helpful, it's hurtful.  And mean.  Like Wil Wheaton says - don't be a dick.)

What about you?  Have you had to hear a hard  truth lately?  How do you find ways to deal with those truths?  Have you had to share a hard truth?  Am I the only one who struggles with saying what has to be said?

I've had to tell people hard truths lately.  It's as hard to tell hard truths as it is to hear them.  It's not fun to tell someone something they don't want to hear, but sometimes that truth has to be said.  I hope those people take the time to really think about what they've heard.  I hope they find a way to learn and grow from it.  They might.  Then again, they might stay in denial and refuse to believe what I've shared with them.  Either way - I pray for them.  I hope they all know that I don't say hard truths out of malice.

I just want us all to do better.  To be better.  Is that so much to ask?

A Little of This, A Little of That

Yup - I'm still kicking.

I haven't blogged in awhile - partly because we have somehow lost the power cord for my laptop.  I know we put it up somewhere, but for the life of me, I can't remember where.  We just recently discovered that the cord for my husband's laptop will work on mine as well, so at least I finally got it charged again.

The other reason I haven't blogged is because I just haven't been my usual cheerful self.  Every time I thought about blogging, it was basically a whinefest, and honestly, no one wants to read that.  So instead I look through Facebook, and read other blogs, and surf through Pinterest, and basically avoid blogging.  Tonight I had to get on my laptop to look up directions for a super secret Christmas project because Yikes!  Christmas is a week away.  I figured while I was on here, might as well ramble a while.

Chemo is ongoing.  Last Friday was my third chemo, and darned if I didn't have a reaction to the carbo out of no where.  It was scary, and no fun, and totally messed up my sleep habits last weekend thanks to the extra Benedryl and extra steroids.  Now my sleep schedule is back on track, but the Neulasta shot I get after chemo to build my white cell counts is making my ankles and knees ache something fierce, so that's made it harder to sleep.  (see?  WHINEFEST!)  My next chemo is scheduled for early January, and I don't know if I'll find out before then what we're going to do about that carbo reaction.  Will they just slow the carbo infusion down? Or are we done with carbo?  What are our other options?  We found out today that no one has done anything about the appeal for the recommended chemo that was denied by my insurance.  I hate not knowing what is going on, and I'm not scheduled to see my oncologist until the same day I'm supposed to have my next round of chemo.  This is not how I planned on spending my Christmas break!

Anyhoo.  That's where we are on that.  In better news, my CA 125 has dropped down to 55, the ascites went away about a week after the first chemo, and we're draining less than 60 mls a day from around my lung.  The chemo is working, and seems to be working pretty well.  I hope we don't lose any momentum.

My oldest son recently moved back home, and we are all re-learning how to live together.  It's hard to remember that he's spent the last year or so not having to answer to anyone, or deal with a curfew.  I'm sure it's hard for him to deal with not staying out all night because his worry wart mama doesn't sleep well until he's home.  We're figuring it out.  So far we've managed to avoid any huge scream fests, so I guess it's going pretty well.  It is nice having him home.  I missed him. 

I'm so not ready for Christmas.  Well - I'm almost ready for Christmas.  I have about 85% of what I need to finish everything up and no motivation to finish it up.  I just pile all that stuff under the tree, and tell myself that tomorrow I'll wrap some presents or put some things together.  So far - no luck.  I'm running out of time though - someone convince me to get going so I'm not doing everything Christmas Eve!

My beloved husband ruined my present for him.  I was so excited - I came up with a brilliant idea of something to get him, something I knew he'd appreciate, but he hadn't thought of asking for.  I had found one at a local store, and had it stashed in my truck.  Then I came home yesterday and damned if he hadn't bought one for himself.  Men.  No idea what to get him now, plus I have to return the one I bought.  Hmph.  If anyone has any brilliant ideas what to get a man who tends to go buy the damn things I WOULD get him for Christmas, let me know.  He may end up with nothing but Christmas cookies.  Or coal.

All in all, things are pretty good.  But going through chemo really messes with my energy levels, and the temps the week after are a pain.  We are hoping that I won't have that this time.  I'm doing my best to enjoy the season.  To enjoy this time with my family and friends.  I hope you all are doing the same. 

Hairology

As I mentioned before, my hair started falling out while I was in the hospital this last time.  It hasn't been as traumatic or heartbreaking as it was the first time.  Honestly, this time it has been just annoying.  Hair is getting everywhere.  I had just had the thought a week or so ago that we were to the point that we weren't really vacuuming up much hair these days since we lost Evie so long ago.  Trust me - as thick as my hair came back, I am certainly making up for it.

I had thought to try brushing my hair out really well each morning and evening, to get all that was loose out and maybe the constant drift of hair around me wouldn't be quite so bad.  I tried that this morning before I got into the shower - hoping that maybe I wouldn't stop up the drain.  Uh - no.  So much came out while washing my hair that all I needed were a couple of little ears and a tail and I would have had a good sized mouse.  Or two.

Ew.  Totally making the hubs clean that up.

When I checked my head after my shower, I realized I now had bald spots, and gave up on the idea of waiting another day or so before having the hubs buzz it off.  Now I have returned to my little old man (only now with receding hairline!) look for the duration.  I kept waiting for the tears to come, but honestly?  I'm just glad my scalp doesn't hurt all the time!

I mentioned on Facebook that I am grateful for perspective.  When this happened last fall, I had such a hard time with it.  But this year, it just doesn't seem like that big of a deal.  Maybe it's because I know it's going to grow back.  Sure - it'll be whiter.  Maybe curlier.  Hopefully still thick.  But it grows back.  If looking like a little old man with a receding hairline is what it takes to get back into remission, so be it.  I'm down with that.

Now I have to decide for Monday - bare head with my buzz and receding hairline, or break out the scarves?  I have a feeling it will be a last minute decision.

Today I'm going to watch Mid-Size University hopefully kick some butt on the football field, and do some laundry.  The hubs wants to cook burgers on the grill one last time before it gets so cold later this week, and we might put up the last of the tomatoes as stewed tomatoes.  I also would like to go out and see what my english peas are up to today.  All in all, it's great to be out of the hospital.

Even without any hair.

Some Like it Hot

Well - hello there!

I honestly intended to blog throughout the week following my return to chemo.  I can assure you that I felt pretty darn good the day after chemo, and up to around lunchtime the day after that.  Then the Emend wore off and as Andy Taylor (the sherriff, not the hot dude in Duran Duran) used to say "whewwww doggy!"  It took me days to recover.  Just when I started to get my groove back, last Friday I started running a bit of a fever.  I was determined to attend the football game because it was Senior Night, and my son is a senior.  I did, however, convince MDH to drive us up there early so we could grab a parking spot near the fence and I could watch the game from the truck.

Saturday morning when I woke up I felt pretty good.  I had had my belly drained on Friday, so I slept wondrfully, but I was a little achy.  Like you are after having a bit of a fever.  After lunch, I encouraged MDH to go ahead and head out to the deer lease and enjoy opening weekend.  I felt fine!  There was no reason for him to hang around the house.

*sigh*

Seriously, he had been gone less than an hour when I started feeling chilled.  The first time I took my temp, it was 100. something.  I had taken a tylenol, so I gave myself 30 minutes for it to take affect, then took it again.

102.5.  Guess who had to call their hubby to come back home to take her to the hospital?  And guess who has been in the hospital since?

For the record, they ran a ridiculous amount of tests, and never figured out what caused the fever.  It was some kind of infection, because my white cell oount was elevated.  At chemo nadir.  But other than a slight fuzziness seen in an xray behind my heart that *might* have been the start of pneumonia, they haven't found anything.  After 3 1/2 days of 102 - 103 degree fevers, tylenol every six hours, and two types of IV antibiotics, the fever started going down.  As of 10 pm on day 5, I am 19 hours without a fever. I'm hoping I'll make it 24 hours, and they'll spring me tomorrow.

The best part (remember - always try to find a silver lining!) of this ordeal is getting to see so many of the wonderful oncology nurses from last year.  They actually put me in the same room I had last year after my surgery.  Some of the ones I loved have retired or moved on, but a huge number of them are still here, and it's been so much fun to see them again.  I've also met a couple of new ones that I like just as well.  Oncology nurses are awesome.

In addition to all this fun (ha!), this morning, the hair on my head started to fall out.  The first time I went through it, I cried.  This time I just laughed, rinsed my hands off and went on.  Of course, it's so very annoying that it loves to attach itself to my electronics - then I try to wipe it off and end up swiping something off my screen.  I feel for the cleaning ladies - as fast as it seems to be dropping, they might have a rug to sweep up in the morning!

I'm crossing my fingers that this week of being in the hospital doesn't push back my chemo.  Currently all my numbers are in the normal range.  If the fever is over (please please please) and non of the cultures grow any critters, I should be ok.  But the oncologist did say he'd have to see how I'm doing next week.  Keeping my fingers crossed!

So that's what is going on in my world.  I had one of my staff bring me some work that I can do up here during the day because oh.my.hell there is only so much HGTV, Food Channel and SoapNet I can stand to watch.  I've made a point to walk around the entire floor and nurses station before I let myself have anything fun from the patient nutrition room.  I'm doing much better, and I hope to hell I never again run a temp of 103 because that's no freakin fun at all!  Hoping your life has been less eventful! 

What Has To Be Done

Today, I start chemo again.

My insurance finally approved the cancer regimen I had for frontline chemo, and right now I am kicked back receiving pre- meds prior to starting carbo/taxol.

The pre-meds they give seem to make me cold. When I arrived, this room seemed to be the perfect temperature. An hour later, I've pulled out my blanket because I'm freezing. It's the meds - they're room temperature and it chills us.

The massive dose of Benedryl I was given is making me seriously sleepy. If I stop sounding coherent that's why.  They have just started the Taxol, which most likely will take 3 hours.  Since it has been so long since my last treatment, I'm supposed to pay attention to make sure I don't have a reaction to it. It's rare but it happens. I just had a hot flash and had to remind myself that those are normal.

I brought my Kindle, my phone and a book to occupy myself. But I have a feeling that I'm going to be asleep. Maybe not too long because I just started Shadow of the Hegemon and I really want to get it read.


Yup. I fell asleep for an hour and a half. I'm trying to wake up enough so when it's time to head home I can drive my car home instead of leaving it at my best friend's house overnight. no reaction which is a good think. 10 days from now my hair will start falling out again. I keep reminding myself to get a picture of my cute sassy do before it's gone.

Next up will be the carboplatin, which is what we're hoping I'm not resistant to. That will only take 30 minutes or so. I'm getting 80% of a normal dose in hopes it won't do such a number on my bone marrow.

So many have sent me support via Facebook today. To be honest, I'm always surprised and a bit humbled by what I read there. I understand in a way. Before I got sick, I never thought I'd handle it well. I hoped I would, but you never really know.  Once it happened, I just did what I had to do. And I just keep doing it. It's not anything special.  It's just doing what has to be done. Trust me - if it were you, you'd do the same. I discovered a long time ago that we're stronger than we think. I assure you - YOU are stronger than you think.  When the tough times come most of us just get 'er done.

We just started the carbo and I'm on the home stretch. I'll be home in an hour or so, and hoping that the nausea is being held off by both the pre-meds and the Zofran I'll be taking 3 times a day. I'm increasing my stool softener for the next few days so I don't get "bound up" as my grandmother used to say. It's the side effect of the pre-meds that no one talks about. The last thing I need is something turning into a partial bowel obstruction. TMI - I know. But I had to find out the hard way. I don't want that for anyone else.

So far, it's been pretty easy. It's so different than the first chemo of frontline treatment. Then I was in the hospital, after discovering I had blood clots in both lungs. This time comparatively speaking, is easy peasy.  I'm so much stronger. And just as determined to beat this crap.

Because that's what has to be done.

Not The Life I Expected

So here's the deal.

I'm definitely recurring - my CA-125 is up to 231.  Way outside of normal range.  Ascites is developing pretty severely.  Yesterday I had 3 liters drained off of my abdomen.  I am averaging about 90 mls a day in what we drain out of the space around my left lung.

Yet I have not yet started chemo.  Because of my insurance.

Look - I know they have to run a business.  And part of that is to have doctors on staff to review things like requests for approval for chemo regimens.  But they need to have doctors that are actually up on the latest developments in the various cancer treatments, and they sure as hell shouldn't be second-guessing on of the top researchers in the field.

They certainly shouldn't take nine days to deny that regimen.  And if they are going to deny that regimen, then they shouldn't take another week to approve the same regimen I was on the first time I had chemo - or request further clinical information.  Honestly folks - my doctor isn't requesting more chemo so that I can lose weight.  It's because my cancer is returning. 

That's where we are.  As of today, my insurance company still has not approved carbo/taxol for my treatment.  My CA-125 has been rising since September, and on October 2nd, nodules were felt during an exam.  Cancer is happily growing inside of me for going on two months now, and because of some random doctor at the insurance company, I don't know how much longer it will continue to run rampant.  My fear is that my most recent CT scan still didn't show any tumors, but just the ascites building, and that they will try to use that as an excuse to delay treatment.  My oncology nurse says I'm scheduled for chemo on Thursday.  I hope they approve it by then.  If it hasn't been approved by the end of business today, tomorrow I will get the name of the person they are dealing with and start calling every hour asking them what the hold up is.  Because folks - this is my life we're talking about here.

Now - before anyone tries to use this as a political issue - stop right now.  This is a health care issue, and there is no doubt in my mind that I would have had this same thing come up 6 months ago.  This is what happens when a business - such as insurance companies - decide to make health care decisions.  While I understand that they feel they are trying to control costs, they are doing so the wrong way.  I am convinced that these types of decisions cost LIVES.  There are people who will not fight with the insurance companies when this happens - I'm not one of them.  But how many people die because some general doctor makes this type of decision?  Health care decisions should be between the patient and doctor.  No one else.  NO ONE ELSE. 

It boggles my mind that this is my life now.  That I am literally going to be fighting an insurance company for my life.  How the hell did this happen?  This isn't the life I was supposed to have.  I'm supposed to be enjoying working my last four and a half years before I can retire from my job and start enjoying grandbabies.  I'm supposed to be getting my garden and flower beds ready for winter, not making sure that I'm walking around enough to prevent blood clots, and getting fluid drained off of my abdomen.   I should be still trying to convince my husband we should take a trip to Cancun, not hoping that I'll be able to go in the early spring depending on where I am with chemo treatment!

Seriously y'all - I've been had.

I can't change it.  Yet sometimes it still seems surreal.  It's hard to accept at times that I have cancer.  Cancer!  Yet I do.  Hmph.

So.  That's where we are.  I'm feeling much better since they drained the ascites off yesterday, a little sore (because ow - having a needle stuck in your side to drain fluid is ouchy even with lidocaine!).  I'm trying to not be too scared, and I'm relieved that nothing yet is showing on the scan.  But it's only a matter of time, so we need to get this show on the road.  Again - any thoughts, prayers, good vibes, etc are appreciated.    Y'all have no idea how much your love and support means to me. 

(And no - I haven't gotten any more senior citizen discounts.  Heh)

The Queen of Denial...

I've talked about my vanity before.  How I've struggled to accept the changes that cancer has brought to my appearance, my body, my self-image.  I might have mentioned once or a hundred times that my hair grew back in gray, and what isn't grey is nearly black.  And that I didn't care for it much at all.

I've enjoyed having thick hair.  Thick hair with a pretty good curl to it.  Yes - I finally got my chemo curls after all.  I just have had a hard time having gray hair.  I've gone back and forth for weeks about whether I was going to just get used to being gray-headed, or go ahead and dye my hair again.  On one hand, there's a lot to be said for growing old gracefully.  On the other hand - I'm only 48, and I'm not so sure I want to spend the rest of what life I have looking 10 years older than I really am. 

Last week I made an appointment with my hair dresser.  I wanted to get my wild locks under some kind of control - as my hair has grown back in, it has grown at different rates, leaving me with odd lengths around my head.  I intended on getting her to even things out, and let me rock a cute sassy spiky do - like I never had the guts to do back in the Before.  I still hadn't made up my mind whether or not I was going to get her to dye it for me.  After all - I'm starting back on chemo soon, and at the very least my hair will thin, if not all fall out completely. 

But then, at lunch last Friday, the cute little cashier at the local Rosa's Cantina gave me the senior citizen's discount.  On the one day when not only was I meeting my best friend for lunch, but at the next table were a couple of old friends from high school.

Seriously?  I'm FORTY-EIGHT.  I know I had a head of grey hair, but really? 

As I posted on Facebook, I was insulted that this kid (who obviously must think everyone over 40 is ancient) thought I qualified for a senior citizen discount, but not so insulted that I gave them their 79 cents back.  It's the least they could do after making me feel old.  In front of my friends!  Hmph.  (Not that my friends didn't enjoy it.  I'm pretty sure my humiliation made their day, if their laughter were anything to judge by.)

Needless to say, when I made it to the hair dressers' later that day, I most certainly did have her dye my hair.  Take that, 18 year old boy.  Not to mention former classmates and alleged best friend.

Was it an extravagance?  Absolutely.  But you know what?  I feel more like myself.  I see myself in the mirror and I no longer ask "who is that old woman?"  I don't know what grandma is doing in my house.  At a time when my belly is filling up more and more with ascites every day, I have no problem splurging a little to feel better about myself as I start a new chemo journey. 

So tonight as I sit here blogging while trying to drink my berry flavored contrast (which let's be honest here - tastes like liquid chalk with a couple of berries mixed in - blech), I'm happy with my dark brown hair with the blonde highlights and the spiky do.  When I go in to get my latest CT scan, and labs, and see my oncologist to discuss what our new treatment plan will be, I go in with the false confidence of a woman who has colored her hair.  A woman who is trying to fool herself into thinking that nothing has really changed.

Even though everything has. But I can live with that. 

Sure beats the alternative.

(And for all those who have already found the grace to accept their gray hair, I am so impressed by you.  One of these days I will join you.  Just...not yet.  Not quite yet.  I choose to live in the land of denial a wee bit longer)

The Next Step

October is a weird month for me now.

A year ago from this week, I was in the process of confirming what I already knew in my heart - that I had ovarian cancer.  I was getting ultrasounds, blood tests, CTs, and paracentesis.  My husband knew, and I told my boss so that I could explain why I was having to take so much time off all of sudden, but I didn't tell anyone else. 

Those were lonely, scary weeks.  I did my best to go on about my life as usual - I worked, went to football games, had lunch with my friends when I could, but didn't really tell them what was going on with me.  By about the middle of the month or so, I had been formally diagnosed with cancer, although the doctor couldn't tell me definitively it was ovarian until I had surgery.  But I knew. 

October is Breast Cancer Awareness Month.  It's a huge big to-do across the national.  I'm pretty sure we all aware that breast cancer exists, and that it kills a ridiculous amount of women each year.

I knew.

I also knew in my heart I had cancer.  Once I was officially diagnosed, I remember telling my friends.  Telling my sons.  Calling and telling my parents.  Then slowly letting people I work with know what was going on, and trying to get them prepared for my being out for a few weeks.

Each time I hear of a new pink activity, I wonder why there wasn't more awareness around for ovarian cancer.  Why I didn't hear anything about it for the entire month of September - which is Ovarian Cancer Awareness Month.  Maybe if I had, I might have gone to the doctor a little earlier.  I don't know - nor will I ever know - if a month made that much difference in my staging.  When I think about when I started getting short of breath, I think it might have.

This year, I made sure the folks in my small community heard about the most basic symptoms of ovarian cancer in September.  And even though it's October, I'll still be stashing symptom cards around town.

As I said previously, we're all pretty aware of breast cancer.  We're aware of how to do breast exams, to get our yearly mammogram after we hit 40.  If all those pink ribbons raised funds towards *research* into a cure and better treatments, I would be happier.  That's what is really needed.  Research. Awareness has been achieved for that type of cancer.  Now the funds need to be funneled towards research - not the foundation's CEO's $700K salary.  Just sayin'.

Because research into any type of cancer can lead to a cure - or treatment - for another type of cancer.  The taxol that I will most likely be starting again next week was discovered while doing breast cancer research.  So let the research abound!  Right now we have a bunch of over-paid polititians holding our government - and many cancer research projects - hostage over political ideology.  I don't care which side you're on - or if you're a middle-of-the-roader as I am.  But it is ridiculous that much needed research is being held up because someone isn't getting their way.  They all need to grow the flock up.

(and that concludes my political rant for the year)(well - at least for now)

Navigating October will be weird this year - as I said - it's the month of my diagnosis and surgery.  I'm flooded with memories of last year every day - made even more surreal as I am recurring this year.  Ascites is beginning to  build up again.  My belly is starting to distend, and be uncomfortable.  I'm short of breath again - not quite as bad as last year, but certainly not the freedom of breath I had even a month ago.  I'm constantly flooded with fear that I will revert to that person who was so ill last November - the one who couldn't go up stairs, or walk very far because she was so weak.  The one who literally had to spend the day after chemo in bed because she was so sick.  I don't want to go there again. 

I was enjoying feeling better, you know?

So far I've managed to keep the anxiety attacks to a manageable level.  I don't have to take anything for them, and other than distracting me from work sometimes, they haven't incapacitated me.  But they are there.  With every twinge, every new ache, they are there.  I keep praying that they'll go away - that I'll find a graceful way to deal with all this without freaking out.  This blog and talking to my husband have been the best ways to keep me calm and focused. But my calm now is nothing to compared to what calm used to mean to me.

Everything changed.  Everything.

I know my blogs aren't all that fun to read lately.  They are full of my fear and dread, and talk about my symptoms and what's ahead.  That's what fills the mind of someone having a recurrence apparently.  It doesn't mean that that's all my life is about.  I'm still doing what I can to enjoy life.  I'm not giving up by any means.  But I write not just for myself, but for any other ovarian cancer patient out there, or their caregivers, or their loved ones - so they know that what they feel is normal.  I wish (oh man - do I ever!) it could be a blog about an ovarian cancer patient in full remission for months on end.  Apparently that isn't the story I'm meant to tell.  So I tell the story I've been given. 

And look forward to the happy ending next year ;-)

Finding Silver Linings

This is my 100th post.

It's only taken me over 6 years to get to 100!  Well - that and cancer.  Let's face it, I didn't start blogging on a regular basis again until I started fighting cancer. 

Last week, my husband and I went down to Houston for a consult at MD Anderson.  We were hoping that I might qualify for a clinical trial - we had always said if I recurred, we would go there.  So - we did.

To be honest, down deep, I hoped I would go down there, and the doctor would tell me "Don't worry!  We'll cure you!"  I know it wasn't a reasonable hope, but there it is.  Needless to say, that wasn't what he said.  He did tell us that all of their clinical trials at the moment required coming to MD Anderson weekly.  We are 9 hours away from Houston, so that wasn't an option for us.  So he told us about several different second line chemo options, and gave us his recommendation for which one he would put me on if I was being treated down there.  He is supposed to send that to my oncologist here, and I meet with him in a week or so.

I have very mixed feelings about going back on chemo.  On one hand, I'm ready to start doing something before the cancer gets any worse.  My ascites in my abdomen is starting back up, and the fluid around my left lung is increasing.  The doctor in Houston was able to actually feel nodules during my physical exam.  I don't like sitting here knowing that it's growing unchecked at the moment, gnawing away at my insides like a rat that's found its way into a bag of grain.

That doesn't mean that I'm excited about being on chemo again.  Although this new regimen is supposed to be less harsh on my body - not as much nausea, I might not even lose my hair although it may thin - fatigue is supposed to be a big side effect.  I don't feel like I have that much energy right now, so that's a worry.  And any nausea is going to suck.

I try to look for silver linings.  While nausea sucks, maybe then I'll lose some of this weight I've gained back since I was able to eat everything again.  My hair came in so thick that a little thinning will probably just make it look like it did before I lost it all.  One of the new chemo drugs is supposed to work well on ascites, so that should go away quickly, and maybe I'll even get to where I can get this last catheter out. 

Most of all, I can continue to fight this lousy disease off.  Maybe - because I'm Stage IV - I can't be cured.  But as long as I can fight, I can live with stable disease.  I can learn to live with cancer. 

On the home front, my youngest was nominated for homecoming court this year.  While he wasn't elected king, we still got a kick out of him being nominated.  He looked very handsome at the pep rally last week, and he managed to make his mama both cry and laugh within two minutes.  I'm so glad I'm still here to enjoy his senior year. I'm bummed however, that every. single.one of the pictures I took of him at the pep rally were blurry.  My only hope is that the mom of the girl he was paired with will share her pictures!

The garden is winding down.  I'm happy to report that I indeed get 1st place in the biggest watermelon contest at the fair this year.  Our entry was 40 pounds, and I'm already plotting how to grow one even bigger next year.  But there is one goal met, eh?  We didn't get as many potatoes this year as we did last year, but we did get some.  The black eyed peas are just about dead, and the green beans are debating how much longer they're willing to put out.  Our cantaloupes, after producing a ridiculous amount of large tasty melons, suddenly died out in about 3 days...some sort of powdery mildew looking stuff wiped them out.  I almost ate so much cantaloupe that I got sick of it.  Almost.  I've always loved cantaloupe.  We did have to share with friends - when you are picking 7 or 8 large cantaloupe a day, there's no way you can eat it all. 

We still have a few watermelons we need to eat, and our peas and snow peas are growing quite well.  We noticed yesterday that the peas are blooming and making peas, so I'm really looking forward to having fresh peas in a few weeks.  If you've never had fresh peas from the garden, you have no idea what you're missing!

So - wish me luck as I start this whole crazy battle up again.  I'll take any prayers, good wishes, happy thoughts and positive energy you can spare.  Because I'm not ready to give up by any means.

I'm determined I'm going to live with cancer.  Whether cancer likes that or not.  Bring it, bitch. 

I ain't skeered.  (much)

What Boys Are Made Of

"Snakes and snails, and puppy dog tails - that's what little boys are made of."

Trying to figure out what to blog - and when to blog it - is a ongoing struggle.  There are things going on that I'm not comfortable sharing with the world at large - much of it having to do with my family.  I try to remember that just because I have cancer doesn't meant that they should lose their privacy.  My husband has been very supportive of my writing here, but I think my boys struggle with it.

They're at difficult ages - 18 and 20.  They are dealing with something I never had to face at their ages - the prospect of possibly losing their mom to cancer.  I don't know how to help them deal with it as I have no experience at that age to draw on.  As they have gone through other things growing up, I always had *something* that I could draw on - but this?  I'm clueless.

My mom is still alive and well and healthy.  My dad as well.  My beloved Aunt Linda passed away when I was in my mid-twenties, and let's face it - we're a lot more grown up and settled at 24 or 25 than we are at 18 or 20.  At 18 and 20 we are still trying to figure out who we are, and what we want to do with our lives, and how we want to do that.  Those are tough things to figure out - and I would imagine even tougher to really think about when your mind keeps turning to "my mom is sick...my mom might die...my mom is better! my mom's cancer is coming back..." 

We have offered counseling to both of them.  But they are boys, raised in redneck country, and I get the feeling that they feel like it wouldn't be "manly" or something if they went.  So as far as I know, they talk about it with their friends, and I hope and pray that it's enough.  And I hope and pray that if they need more, that either one of them will feel comfortable enough to come to me or their dad and ask.

I get the impression from them that they are tired of mom worrying about them so much.  Both do their best to reassure me when they can that they are fine, that they are handling the chaos that comes with a parent with cancer just fine.  Being just 18 and 20, they can't begin to understand the love that a parent has for a child.  They just can't - no more than I could until I had children of my own.  They think I'm worrying unnecessarily.  The love of a parent for a child cannot be explained to someone who doesn't have children - either of the body or of their heart - it doesn't matter.  It's just a different kind of love.  It can be overwhelming at times - for the parent as well as the child.  And it is oh-so-hard to let that child go out there and make their own decisions and choices.

But we have to - the whole idea is to raise them so they are able to make it on their own someday.  I have to trust that everything their dad and I tried to teach them over the last 18 and 20 years will find fertile ground in their hearts.  I have to trust in their choices, even if those choices might not be *my* choices.  I won't lie - it's hard - so very hard.  It's doubly hard when you're aware that you might not be around when they finally get it all together.  That you might not see them finish college, find a career that they love, marry, or have children of their own.

Sometimes that is what hurts the most - the possibility that I might never know my own grandchildren.  I am almost positive that I'll never know my own great-grandchildren.  It pisses me off.  Except for my grandmother who passed away from ovarian cancer in her 50's, the rest of my relatives were fairly long-lived.  My dad's father is in his 90's and still kickin'.  I had every expectation of living to be a sorta sweet little old lady, spoiling her grandchildren and great-grandchildren.  Now?  I'm not so sure.

So I try to trust in our raisin' of them.  I pray for them every chance I get.  I try to be available to them in case they want to talk - and if they aren't comfortable talking to me, or their dad, I'm supportive of them talking to anyone else that might help them get through all this. But most of all - I just try to love them without smothering them.  It's hard to do when you don't know if you'll have months or years or decades to show them how much you love them.  I just hope for the best.  I hope that what they are made of is strong stuff.

And maybe - just maybe - if all of y'all reading this can drop a prayer to the deity of your choice, maybe my boys will be ok.

It's not too much to ask, is it?  

Being Aware

I haven't written lately.  Here it is, September, Ovarian Cancer Awareness Month, but I haven't written.  I should have.  I should have been writing about the things I've been trying to do to raise awareness for ovarian cancer - making bracelets, having an awareness get together at my office for other ladies in my college, attending the Teal Out pep rally at my son's school and speaking, getting his school to have an ovarian cancer awareness football game, raising funds for ovarian cancer research, and even getting that game mentioned on the local news. 

It's been crazy busy, and so gratifying.  Thanks to some help from wonderful ladies at work and in Hicksville, we raised over $500 for ovarian cancer research.  Seeing everyone wearing the Team Teal tshirts for the pep rally and game just about undid me.  My son's speech at the pep rally literally brought me (and just about every other mama there) to tears.  So why haven't I been blogging about all this as I went?

Because my CA-125 went up. 

I'm no longer considered in partial remission.  At my check up at the end of August, it had gone up to just a few points over normal.  When we re-tested last week, it jumped another 26 points.  Scans have been done, and those were clear (woohoo!) so whatever is going on in there is smaller than a centimeter.  But something is going on.

Recurrence less than 6 months from the end of chemotherapy indicates platinum resistance.  And that makes my cancer a little harder to treat.  I have an appointment with my oncologist this coming week and we'll know more then. 

I've always known that recurrence was a real possibility for me.  Those of us with ovarian cancer that don't recur are the exception.  In a way, I had been preparing for that since the beginning.

I just hoped it would be a little later on, you know?

When I first learned that my count went up again, I spend my afternoon worrying about what it meant, then came home and broke down.  I try to keep a brave front going the majority of the time, but sometimes you just need to let it all out.  So that evening, while my son was at band practice and my husband wasn't yet home from work, I wept and wailed and felt sorry for myself.  My poor husband came home when I was almost done, and he did his best to comfort me.  To be honest, I'm not sure I really wanted to be comforted at that point.  I wanted to just take the time to feel bad, to mourn my dreams of a long first remission, to find some way to come to terms of what this first recurrence will mean for me 

Does that make me selfish?  Whiny?  Maybe.  I think sometimes those of us with cancer feel like we have to be so damn brave and noble all the time.  You know what?  I didn't want to be brave. Or noble or a freakin' inspiration for anyone.  I just wanted to be healthy.  I just wanted to not have any freakin' cancer, damit.

Being an inspiration is over-rated y'all.  You know what you have to do to be an inspiration?  Have something god-awful happen to you.  So. Not. Worth. It.  If I had my druthers, I much rather be a nobody.

But we don't get to pick and choose with cancer.  Oh sure - some cancers are directly related to lifestyle choices you've made.  With ovarian cancer, not so much.  It most likely was destined to be because of who my family was.  Since it's so hard to detect, and there is no screening, it's just the luck of my draw. 

Just when my hair gets long enough that I start thinking of getting it shaped and colored, it may end up falling out again.  Or it may not - depending on when my doctors decide it's time to go back on chemo, and on what chemo they decide to do.  Luckily there are lots of different treatments out there, even for us most-likely platinum resistant folk.  This is no where near the end, but just a new chapter.  And I am gearing up to kick cancer's butt - again.

So that's what's going on with me. 

Out here in the boonies, the tomatoes are finally ripening, so I've been making hot sauce and canning it, as well as canning green beans and black eyed peas.  The cantaloupe is finally ready, and they are HUGE and oh so tasty.  I tell ya - west Texas grows some awesome cantaloupe.  We grow an heirloom variety and save the seeds.  If you are ever wondering what a good heirloom cantaloupe variety is to grow in this area, we highly recommend Hale's Best.  We literally have to use the largest 18 quart Tupperware bowl to keep it in, as many of them are nearly a foot long.  Since you can't really can cantaloupe, we are eating it with every meal, as well as enjoying fresh green beans, peas and tomatoes.

We are already eying a couple of our watermelons - we'll have to decide later this week which one is the biggest so we can enter it in the fair.  Last year, before I got sick, one of our watermelon's got third in the biggest watermelon contest.  This year, our volunteer (as usual) watermelon is a different variety, and those suckers are getting big.  I'm hoping for first this year!  I'll also be entering one of my jars of jelly because it was so darn pretty. 

The chickens went on an egg laying strike last week.  We're not really sure what their problem is.  I suggested to the hubs that we inform them that fall is a great time to put chicken in the freezer if they're not fulfilling their egg-laying duties.  I'm not sure why he keeps rolling his eyes at me.  It started when I began referring to the cow as Lactation. Wait until he hears that I've named the roosters Fricasse, Nuggets, and Fried.  Heh.

Tonight I'm watching some pre-season hockey, after enjoying some college football earlier in the week.  Our Mid-Size University has a new coach this year, and he's been doing really well so far.  It's fun to watch those games again.  Unfortunately, Hicksville lost their game last Friday.  My son took it very hard, but we were playing the #3 ranked team in the state.  To me - the fact that we had such a great response to the Team Teal concept made it a win in my book.  As I've said before - Hicksville folk are awesome.  I love their heart.  I'm so glad we moved out here.

It's good - this Living in Hicksville.  I intend to keep on doing it.

Oh No He Di'n't...

Dear Daddy Longlegs -

WTH dude?  I thought we had come to an accord?  You stay in the high corners of the ceiling, and eat all of the flies and gnats and skeeters you and your family can handle, and I would leave you alone to complete all that circle of life shit.  And it was working - I left you alone.   Let your little wispy webs exist high up and out of way where I can't see them, and only my mother-in-law looks.  She only comes down once every three years, so we were good.  We were happy.

So why the HELL would you choose last night as the time to weave a web across the doorway to the living room?  AT FACE LEVEL????

Buddy.  It is ON.

Remember Bill Murray's character on Caddyshack?  He is my hero.  I will clean every corner, every crack, every crevice in my house to avenge myself of having to start my day doing the heebie jeebie dance after walking through that.  I am not above delving into the use of chemicals to make sure that my house will be web free. If it comes to using explosives, I'm not afraid.  You betrayed me.  And you. Will. Pay.

I know what you're thinking.  You're sitting up there in the corner laughing, thinking there is no way I can obliterate all of your many children and grandchildren.  You see all of my husband's cutter and think there is no way I can thoroughly clean you all out.  You underestimate who you are dealing with here.  I'm a Taurus.  We invented stubborn.  Not to mention determined.  Have you not been paying attention this last year?  I beat CANCER bitch.  I can take out an army of spiders.

IN MY SLEEP!!

So I advise you get your webby ass out of my house.  You have until Saturday.   After that?

Bring it.

Two Down...

Today I had one of my pleural catheters removed.

Last November, I had two pleural catheters put in when they installed my chemo port.  They did this because I had so much fluid around my lungs it was hard to breathe.  For a long time, we had to drain every day.  Then, as I went through chemo, the fluid lessened, and we went to draining every other day, then every three days.  Sometime last spring, the fluid around my right lung reduced to the point that I've only been draining that side once a week.  A few weeks ago, it became obvious that we just weren't getting anything measurable out of that side.  So - today the surgeon removed it.

Last November, when I got out of the hospital, I had 3 tubes in my body (I also had an abdominal drain that was removed several months ago).  I was weak and could barely walk.  I couldn't sleep without being on an incline.  Hell - until we got a hospital bed installed at home, I slept in my recliner.  I was on IV nutrition twice.  And at times, I wondered if I would ever get back to normal.

Well - normal isn't what it used to be.  But I'm down to one tube.  I have hopes that someday I won't have any tubes.  That's what awesome in my world today.

It's been crazy busy at work lately, and this probably wasn't the best time to have to take a day off.  But I wanted that tube out so badly, even though I knew it would make my job a little bit more crazy tomorrow.  I have another oncology visit on Thursday, and that doesn't help matters.  But it is so worth working a couple more 11 hour days to be a step closer to tubeless.

I attended a cancer support group this month, and I found that to be really helpful.  I'm not sure why hearing the stories of a bunch of stage III and IV survivors helped me so much, but it did.  I even met another ovarian cancer survivor - one that has many years of remission.  If anyone out there is wondering if they should go to one of those meetings - do.  It's worth it.  The next meeting is on my son's birthday, so I'll miss that one, but I'm looking forward to the one after that.

Next month is Ovarian Cancer Awareness Month.   A week or so ago, one of my staff was sweet enough to nominate me to win a cake from a professional bakery on Facebook, and we won!  I've requested an awareness cake.  September 5th is my son's birthday, the 6th is National Wear Teal Day, so we're going to have a little teal event at work with that cake.  If there's anything left, then I guess J gets a teal cake for his birthday.  (Oh I kid.  I'll get him his own cake, or big cookie or whatever he wants.  He's turning 18.  18!!)

On the 13th, Hicksville's football team will be wearing teal athletic tape, and I will be sitting at the booster club table, handing out symptom cards and selling bracelets to raise awareness.  A sweet Hicksville lady has designed a teal tshirt that we're going to sell so folks can wear them to the game, and raise a little more money for ovarian cancer research.  On the 14th, I'm hosting a "Teal Fest" at my house to raise a little more.  No idea exactly what we're going to do that evening, but there will be wine and good food, and good company.  Well - I hope good company! 

I probably won't raise thousands of dollars.  I may not even raise hundreds.  I'm starting small with this fundraising thing.  It's a brand new thing to me.  But I feel like I have to.  Like I'm almost being called to.  It's like I figure maybe this is why I got cancer - maybe this is why I survived when so many don't.  I could be just fooling myself, but I've always thought if I can make any kind of difference from what I went through, it'll be worth it.  One way or another.

In other news, Fricasse and the rest of the chickens have finally stopped sitting on their eggs.  Eventually we'll get the two different breeds we have separated.  Wilbur, the wild hog we attempted to raise to adulthood, gave in to the heat.  We are so not hog breeders.  Lactation and her pregnancy seems to be progressing well, but we noticed this evening that she's developed a pretty bad limp.  We're not sure what happened to her and we're hoping that it's not too serious.

The garden is doing very well - we're starting to get some tomatoes, eating green beans during the week, and I actually canned some black-eyed peas last weekend.  Good Lord willing, we should have home grown cantaloupe to eat before too much longer, and I've got my eye on this year's entry into the biggest watermelon competition at the fair.  Last year I got third.  I'm aiming for first this year!  I also made grape jelly a few weeks ago that was turned out *gorgeous* - so I'm going to enter that in the fair too.  Winning the bell pepper division last year turned me into a fair ribbon junkie.

All in all - just another fine day in the boonies. 

Contemplating the Mundane

The last two days have been lovely out in Hicksville.  I've woken up to temps in the 60's, rain yesterday and clouds today.  It makes it so much more pleasant to pull grass and weeds in the garden.  This morning I was pulling wheat from the hay around my potato plants.  I pull it, twist the roots off and feed it to Lactation.  She loves getting something besides dried hay and the tops of weeds.  Yes, it's a pain to have to pull the wheat when you use wheat straw as mulch, but taters seem to grow so much better mulched in like that.  The only sounds were my roosters crowing and the neighbor's donkeys braying.  A peaceful contemplative morning.

I'm not going to church these days - not because I have anything against church, but because I only have so much time to work in the garden.  It's too hot in the afternoons and evenings, so Saturday and Sunday mornings have to do.  I do my talking to God during these mornings in the garden, praying for my loved ones, my friends, and in general.  I miss seeing everyone at church, but it doesn't feel right to go to Family Night when I haven't been to church in weeks. Once it cools off, I'll be back.

I had my followup with my new gyn on Friday.  I didn't realize how nervous I was about that visit until I heard her tell me "I don't feel any masses, or nodules.  As a matter of fact, everything feels normal.  No enlarged lymph nodes, nothing."  The wave of relief that washed over me made me realize just how much worry lives at the back of my mind. 

I'm grateful to be feeling so well.  To be able to make jelly and freeze corn, to weed and harvest my garden, to shell black eyed peas and snap green beans.  Still haven't gotten into the swing of cleaning the house every week, but I do keep up with laundry for the most part.  I know I'm lucky, and every day is a gift.  But it's so hard to stop worrying.  To wonder at every ache or twinge. 

To try and keep my mind off of worrying, I'm trying to be more pro-active.  I'm working to get the only home game in September designated Ovarian Cancer Awareness night.  The coach has agreed to have the boys wear teal athletic tape.  The booster club has agreed to let me sit at their table and hand out symptom cards.  I'm thinking of selling ribbons or bracelets or something to raise some funds for ovarian cancer research.  While at my new gyn's office, she told me that someone from my surgeon's office was organizing a Ovarian Cancer Walk that I'm thinking of participating in.  It won't cure me, but at least I feel like I'm doing *something*.  And maybe, just maybe, there will be some woman who reads the symptom card I'll be handing out and recognizes that she might want to see her gyn the next week instead of assuming that there's nothing to worry about it.

I tried a counseling session, and I'm just not sure that's what I need.  This week I plan on going to a cancer survivor support group meeting - hoping that talking with others that have gone through what I have will help.  I haven't had as many blue days, but they still crop up.  It may end up just being part of my new normal, but I'll attend that support group meeting just in case. 

What seems to help the most is talking with my friends, my husband.  I seem to head to that blue state when I'm not talking to people, trying to be "brave" or "tough."  I do better talking about things, and not dwelling with might have beens.  I'm also learning to ration my time on Inspire.com. Too much time there has me wondering when I will recur, instead of wondering if. 

It's the busiest month of the year at work, and after a full day there, I'm not always in the mood to do much when I get home.  I tell myself day after day I'm going to blog when I get home, but most days I just want to rest when I get here.  So far the hubs isn't minding being the one to make supper most days, but I'm not sure how much longer that will last.  One of these days I'm going to get organized again.  Really!

Until then, it's mornings in the garden, and waiting for football to start up again.  Mid-Size University has a new coach, and we can't wait to see what he can do.  Hicksville football is in two-a-days and my youngest has decided to play his senior year.  Senior mom and dad shirts are ordered already, and we're ready for our friday night lights. 

Just like normal people.

The X Files

Early in my first pregnancy, I lay on our couch one night with my hand lying on my still flat stomach, watching TV.  I had just started noticing a slight rounding of my stomach - a hint of the expansion that was to come.  I don't remember what I was watching, but I do remember what I felt.  It felt almost like a gas bubble - a soft, barely perceptible push against my hand.   It was the first time I had felt my baby move, and in that moment he became completely real to me.  Before that soft movement, I knew I was pregnant, knew I was going to have a baby, but it was all kinda abstract.  Once E pressed against my hand, it all changed in a moment. 

That was my moment - not shared really with anyone.  While I told my husband about it later, that moment was all mine.  It wasn't when he felt the baby move for the first time - that happened later.  It was mine.

On my way home today, I felt a gas bubble that almost felt like a baby moving inside me.  Since I lost my omentum during my debulking surgery last October, I can feel gas as it moves through much easier than I could in the before.  If it's moving through my small intestine as it tries to bulge through my incisional hernia, I can really feel it.  Today it struck me how similar it was to that first movement of my son all those years ago.  And how last fall, it all changed in a moment as well.

It's an apt comparison.  After all, my cancer is like an alien I grew in my belly - something foreign and new, cells dividing and multiplying and changing my body.  More like a mutant - those dividing cells abnormal and lethal instead of having a fund super power like laser vision or the ability to control the weather.  Even more like a parasite - living off my body, taking over my abdomen, doing its best to displace what was me with its malignant replacement.  My own version of the X-Files.

There is a tendency to try to personify cancer - to infuse it with personality traits, labeling it evil or wicked.  The truth is - it's just cells gone wild - rapidly multiplying instead of showing its neutrons off to the other cells to see who can collect the most strands of DNA like chicks on Bourbon Street during Mardi Gras.  My cancer can't even be blamed on my wild impetuous youth - there aren't environmental factors that contribute towards ovarian cancer.  I can't blame spending too much time in the sun, or smoking too many cigarettes, or drinking too much booze.  I just may have ovulated too much.  Not much I could have done about that.  I had my two kids, and I chose an IUD rather than birth control pills because I didn't do well on the pill.  Not that they're sure that ovulating every month for years on end causes ovarian cancer - they just think it might have something to do with it.  But they don't know. 

They just don't know.

I haven't been blogging much lately.  I'm still fighting the blues that seem to have decided to hang out in my head this summer.  Don't worry - I have an appointment with a counselor set up, and it's not ruining my summer.  I spend my weekends working in the garden and spending time with family and friends.  I'm not depressed - just a little unsettled, a little unfocused.  More likely to lose myself in a book or a TV show or a movie.  Then I don't have to think about the friends that have lost parents or husbands in the last few weeks - and how I've been too cowardly to reach out to them during their bereavement. Or think about what comes next - or what might be growing in my belly or around my lungs while I'm taking this chemo break.   I know I can't run from those feelings and thoughts forever.  But right now, that's what I'm doing.  I'm hoping talking to someone will help me deal a little better.

I'd really like to stop comparing my gas bubbles to mutant alien parasites, ya know? I'd like to find a way to stop trying to figure out why me?  Why not me?  I'd like to stop constantly worrying that every ache, or pain, or itch means the cancer is growing again, that I'm platinum resistant, that I won't get my 10 or more years. 

It's one of those things that cancer survivors have to figure out - how to return to their lives After.  How to live every moment, and not worry and obsess.  You would think being in remission (even if it is just "partial") I would be partying it up.  I don't know how to do that.  I'm trying to figure it out.  I'll keep y'all posted.

Until then, I'll just keep taking it day by day as much as I can.  So here are a few things that help me remember how lucky I am:

One of my crepe myrtles, and Grandma's cast iron bench.

My favorite roses.

My other favorite roses.

 

And my garden doing its thing.

It's not a bad life, eh?

Living the Good Life

We've had rain out here in Hicksville lately.  Wonderful glorious rain.  Our fields are a pretty green color you can only get from weeds.  Ah well - so far, the cow seems happy with them.

Speaking of our cow - we used to call her Steak.  Because we're warped.  But now the hubs sent her off to get knocked up, and we're pretty sure she obliged, so she needs a new name.  I've considered Lactation, but only if you say it with a slow southern drawl.  Go ahead. Try it.  Makes ya feel a little like Scarlett, doesn't it? 

I say pretty sure, because we don't know how to tell if she is really knocked up or not.  I googled how to figure that out a minute ago and I would like to say oh HELL NO.  I'm not stickin' my arm up any cow's booty.  [shudder]  Just the thought wigs me out.  So I guess we'll just wait and see.  She's getting mighty rotund and spends alot of time laying around waiting for someone to feed her fresh green stuff or cow bon bons or something.  Maybe we'll have a cute little calf to get entirely too attached to so it'll never be sent to processor after all.

We still don't have any baby chicks.  A few hatched, but none of them lived very long because apparently Java's are crappy mama hens.  Now I have four more hens setting, but they haven't had a rooster on that half of the coop for weeks, so they're pretty much wasting their time.  I'm going to have to get some eggs that might actually produce chicks and move them over there.  Otherwise those poor hens are going to start doubting their ability to hatch chicks, and the last thing I need are neurotic hens.

My garden has been loving the rain we've had lately.  The green beans have tiny little beans growing, and I actually found potatoes under some of the volunteer potato plants.  I've found some green tomatoes.  My onions seemed to have all died out.  I'm not sure why - they were getting watered, and we had mulched them in, but I can't find any of them now.  So they either died, or the evil bunnies that inhabit our land snuck in and ate them all.  Bastards.  Unfortunately, the weeds and native grasses have enjoyed the rain as well.  I've spent the last couple of weekends pulling weeds and grass and mulching. 

We don't have but a few weeks left of summer - and it makes me sad.  Just when I start feeling like myself again - waking up to have my breakfast on the back porch, then spending a few hours in the garden.  Sometimes I almost forget what I had been doing over the last nine months.  Sometimes I fool myself into thinking it was a bad dream - or that it happened to someone else.

Then I bend over to pull a stray weed out of the lawn, and the fluid around my left lung follows gravity and ow.  Or my incisional hernia feels like my intestines are about to pop out.  Then I remember that I'm not the same person I was a year ago.  Now I'm a cancer survivor.  Now I have limits to what I can do.

It's better than the alternative.  I'm alive.  And I'm living my life.  Spending time with my husband, and my kids when they have nothing better to do.  Someday I hope it won't hurt when I bend over to pull those weeds.  I won't have to have a cart to sit on as I roll around the garden and pull grass.  I won't have to hold my hand over my hernia when I sneeze because I have a fear that my intestines are going to shoot out across the living room.  (No - I have no idea what hyperbole means.  Why do you ask?)

Another friend of mine will be laying her mother to rest tomorrow.  I never met her mom, but she sounded like a wonderful lady.  Skin cancer took her.  I don't know why I went into remission and she didn't.  I hate that my friend lost her mama.  Yet I'm glad my boys didn't lose theirs.  I'm glad I can call myself a survivor.   I wish her mama could have too.

Things are good right now out in Hicksville.  We're going to try to enjoy the last few weeks of summer.  I hope you do the same.  Live deliberately.  Embrace each moment.  I'm determined to do that myself, and to not let myself get caught up in the daily grind again.  Now I know all too well - you just never know how much longer you have.  And like they say - no one says "I wish I had worked more."

I'm pretty sure no one says "I wish I had stuck my arm up a cow's booty when I had the chance" either.

I Get By With a Little Help From My Friends

This morning I had my breakfast on the back porch, as I did so many mornings last summer.  I listened to the birds chatter to each other and to our roosters greeting the day.  It was a still, perfect beautiful morning.

I needed that today.  Lately it seems as if I'm surrounded by sadness. Three funerals today that I should have gone to.  The mother of a friend is now on hospice.  Another friend just lost a dear friend of hers to MS.  A former classmate's wife just diagnosed with late stage ALS.  And last night a two year old little boy drowned in our community.  It's just too much.

I'm not sure why all of this seems to happen at once.  Why bad news seems to come in clusters.  I just know that I don't handle it as well as I used to.  Last year I would have tried to go to at least one of those three funerals.  This year - well, I haven't been able to attend a funeral since my diagnosis.  I feel cowardly for not going.  But it's just too close to home for me right now.  I don't want to go and imagine my own funeral - and I know that's what I would do.     

I try to remember to pray for all of these people every night.  I try to focus on just how blessed I am right now - it could be so much worse.  But the sadness comes at me from every direction.  I know that it just might be time.

Time for what?  Time to talk to someone professional.  I've been struggling a bit with feeling a bit blue lately.  It's probably pretty normal - after all, I just spent months fighting off a wicked disease that was aiming to kill me.  I was so focused on that, and now it's like I'm just trying to figure out what's next.   The blog has been a huge help - I've been able to write through so many of the things I've been going through.  But I'm feeling a little overwhelmed these days.  At my monthly oncologist visit last week, I asked for a referral, and I will be getting something set up in the next few weeks. 

So many of us feel like we can't go to counseling - that it makes us look weak.  I'm trying to not think of it that way.  One thing I learned throughout this journey is that I can't do it all myself, and it's ok to ask for help.  It doesn't make me weak to do that.  It makes me smart to not try to do it all on my own - and to know when to ask for help.

And in the meantime, I'm going to try to enjoy the peaceful still mornings.  Right now we have a hen setting on eggs again, we're pretty sure our cow is going to have a calf of her own in a few months, the garden is growing well, and a big rain is predicted for next week.  Life goes on.  That's what I need to focus on. What we all need to focus on.

Life goes on.

Let's Talk About Sex, Baby....

(Today's post is a frank discussion about sex.  If you are related to me, especially if you are a male related to me, or a friend of my sons, for the love of God - click away now.  NOW!!!!  These are not things you want to have in  your head when I see you on holidays.  Or any other time.  This especially includes my Daddy.  Daddy PLEASE - don't read.  And if you do - please don't ever tell me you did.  EVER. Love you.)

Despite having grown up smack dab in the middle of The Bible Belt, USA, I've always had a pretty good outlook about sex.  Most of that is because of the women who raised me - my mom, who is awesome and didn't blink when she discovered I had been reading her bodice-rippers in junior high (she just said "if you have any questions, let me know.  And keep in mind, it's just a story.  Real life is different"), my grandmother on my mom's side (she and my grandpa shared a bed until the day she died, no twin beds or separate rooms for those two), and my beloved Aunt Linda, who was like a second mom to me.  Both my mother and aunt talked frankly with me as I was growing up, and neither of them hesitated on confirming that yeah - sex is fun, even after marriage.  Especially after marriage.  It's what God intended (if you believe in Him), and it should be a big part of any healthy marriage.

Because of those two awesome ladies, I've always been pretty comfortable with my sexuality, and with my body and everything that goes with that. When some of my girlfriends would sit around and bitch and moan about how they were too tired or just not in the mood and oh my lord their husbands were always wanting to do the deed and why can't he just let me sleep....I would sit quietly thinking "um - somebody ain't doing it right, because if they were, these chicks wouldn't be bitching so much."  That probably sounds pretentious, but it's the truth.  I just didn't get why so many women weren't interested in hitting the sheets with their man - wasn't that part of the deal?  Most of them hadn't waited until they were married, so it's not like they didn't know what their husband's skills were in bed, or that he liked sex.  Um - hello - man.  They all like sex.

One of the side effects of most cancer treatment is a loss of fertility.  For many women,  the chemo and/or radiation cooks their ovaries so they don't work so well anymore.   With ovarian cancer specifically, you lose half of the parts that make you a woman.  It can be devastating to a younger woman - one that hasn't had all the children she had planned on, or one that hasn't decided if she wants children or not.  The surgical menopause - as I've mentioned before - is horrendous.  And all that is talked about pretty openly.

But what about sex?  Yeah - no one talks about that. 

It should be talked about - no one should have to wonder if their sex life will ever be normal again.  For ovarian cancer patients like myself, there is the worry that we might not feel desire ever again, or even worse - what if we do regain our desire, but lose our ability to orgasm?  Just how big a part does the uterus play in achieving orgasm?  Will sex be painful now?  Is that a given?  Will those personal moisturizers [wink wink] really help so that it won't be painful?  Will my husband/partner even want to have sex with me again?  I literally have a question mark on my belly - as if the surgeon knew that my whole sexuality would be in question.

The hubs and I had to discuss these things beforehand.  We talked about it as I recovered from surgery, we talked about it as I went through chemo.   We have talked about whether he would still find me sexy after my surgery, and after all the things I went through recovering from that.  How could any man be attracted to a woman that he had to watch hurl for hours?  Who spent three days with a tube down her throat that made her sound like Slingblade when she talked?  Not to mention other intimacies that you go through recovering from major abdominal surgery that were beyond embarrassing.  Let's not forget I have these freaking tubes on my sides, and my hair is currently shorter than his.

Let me tell ya - I am one sexy beast.  Not.

So you take all of that and you get one insecure wife.  Add in the hot flashes from hell that flare up whenever he touches me, and a considerate husband that is afraid of pushing too soon, or that I'll hurt, or break or whatever - it was a mess.  As a couple, we were lost.  Since I see a regular oncologist, not a gynecologic oncologist for my treatment, I don't think he was comfortable talking about when it was ok to resume marital relations.  It's not something that's addressed in the cancer binder you get.  There's talk about eating, how to manage nausea, regaining your strength, dealing with hair loss, but nothing on dealing with intimacy loss.  Or how to re-start your sex life after recovery.

So we muddle through.  I'm not going to discuss where we're at in that process.  I still have a son in high school, and the last thing he needs to hear is punky school mates giving him a hard time about his parent's sex life.  As it is, I have to get the hubs to read through this to make sure he's ok with me putting this all out there.  I'm hoping he will be.  I hope he realizes how important it is that there be some type of discussion of how sex changes after treatment, especially for those of us whose cancer affects our sexual organs (including breast cancer patients - talk about a whole slew of body image issues and feelings!).  It needs to be talked about.  There needs to be better resources.  Women should not feel that their sexual life is over just because they had cancer.  The idea that I might never enjoy sex again was a scary one for me.  I know I can't be the only one out there that's worried about it.

So let's talk about sex, baby. 


(For the record - I had my husband read this before I posted it. While he admits it made him a bit uncomfortable because he's a very private person, he agreed that it's important to talk about this stuff, so here it is. )

Reunited...and It Felt So .. Weird.

This past weekend, I went to my 30th high school reunion.  I debated myself long and hard about going.  After all - my head is covered with a quarter inch of insanely gray hair and my eyelashes are about half their normal length.  But I did want to see a few people, and it's always fun to see what your former classmates look like now.  I even attended the tour of my high school to see all the changes.  There is now carpet in the hallways, and still no elevators to sell tickets to.  (Only a Plainsmen will understand that.  Heh)

There is a weird doubling of vision at a class reunion.  You look at Billy Bob and while you see him as he is now, 30 pounds heavier and certainly balder, you also see him as he was - with his blonde hair and the clean shaven face he sported back in the day.  He moves the same, and he sounds the same - but that weird overlay is there.  As you see him move around and visit, you have flashes back to high school - remembering moments you shared, conversations you had.  Then you shake your head and he's back to being just Billy Bob - a little older, a little greyer.

Then there are the folks (mainly men, by the way, and that is so unfair) who haven't changed a bit.  There might be a couple of lines on their faces, but for the most part, they haven't changed and you can't help but wonder if they have a painting in their attic.  Bastards.  Age,  will ya!  It's only fair.  If I have to have these laugh lines and grey hair, so do you!  Hmph.

I struggled the most with those who I couldn't recognize.  Thank goodness for the name tags most everyone wore (although I would enlarge the print for the 35th reunion - I'm sure I'm not the only one who's eyes are going).  It should be mandatory that everyone wear a name tag at all events, in my oh-so-humble opinion.  I feel so strongly about this that I'm going to put myself in charge of the name tags next time.  (Yes Crista and Allison - I'm serious!  One less thing for y'all to have to deal with!) There are still several folks that I didn't recognize.  There was one that I was sure who it was - then I saw him the next day in town, and he wasn't even there!  He somehow missed the whole weekend.  Oops.


Over the years I've become friendlier with some of my classmates thanks to Facebook and Pinterest.  One chick that I was in drama with has discovered just how geeky I really am.  It was fun to see her, but I didn't get near enough time with her.  I get the feeling that we could sit and debate sci-fi movies for hours.  We totally need to do that over adult beverages one of these days. 

I wasn't one of the "popular" kids in high school.  I didn't really belong to the "cool" kids group/clique/whatever you called it.  I wasn't a "grit," or a "nerd" or a "jock."  I might have been considered one of the "stoners" - but although I did my share of illicit activities, it wasn't my be-all, end-all.  I was friendly with kids from most of the groups listed above.  Since I didn't really fit in any particular group, I pretty much created my own little group, and we thought we were pretty cool.  But most of the girls I was closest to were in the grade behind me.  Those are the chicks I really would love to hang out with at a reunion.  I'm seriously contemplating crashing their reunion next year. Ha!

To be honest, my husband and I didn't really visit with that many people there.  We did more people watching I think, which I find just as entertaining.  But once again I came away from the reunion a little down.  I don't know if it was because of my hair, or my energy level not being what it used to be, but I just felt out of place a bit.  I had moments where I felt comfortable, but most of the night I missed my girls.  Melissa, Becky, Marla, Bret, 'Nicey,.  Those are the chicks I wanted to hang out with and re-visit old times with.  The majority of the kids from my class that I hung out with were dudes, and oddly enough, wives don't always appreciate some chick sitting and re-visiting old times with their man - even if there was no dating involved.  Go figure.

There is no guarantee I'll be around for our 35th.  It's my plan to be here.  Just in case, I went this year.  I'm glad I did.  It's part of my new philosophy - to live with no regrets.  I don't to look back and think "I wish I had gone to that last reunion."  I'm living my life with intent now.  No more what might have beens.  No more regrets.  So far - so good.

Now to start planning for that trip to Cancun.....

Missing: Work Enthusiasm

In the fall of 1990, I was hired by the Department of Geeky Science at Mid-Size University.  I was hired as the receptionist.  It was my second real office job, an entry level position.  I was so thrilled to finally be working for Mid-Size University - at last I could put food service behind me.  Around 10 am that first day at work, a student came into the office, saw me sitting at the front desk, and stated - loudly so as to be heard by not only every person located in the Dept. of Geeky Science, but also over in the Dept. of StuckUp Geeky Engineering across the courtyard - "Hey!  I know you!  You used to work at Burger King!"

Well, so much for that. 

Despite that embarrassing beginning, I grew to love working for Geeky Science (to be known as GS from now on).  I enjoyed working with the students, and with the faculty, and eventually with the alumni.  When I got up in the morning, I looked forward to going in to work.  I loved the variety at my job, and I loved what I did. I was a young engaged woman when I started.  I got married while working in GS, had both my children, tried leaving the department for two years, and practically begged to go back when my old position opened up again.   They threw me wedding showers, baby showers, anniversary parties, and the occasional birthday shindig.  And when I developed cancer, they rallied behind me and supported me, even though I disappeared on them for 4 months with very little warning.

A large part of who I am now is because of that job.  It taught me how to multi-task, how to anticipate, how to delegate, how to be diplomatic, how to interact with people from all sorts of cultures and nationalities, and how to appreciate those differences.  I grew from a nervous girl into a confident woman - secure in my place, happy that I had found my niche.  I knew how lucky I was to love my job.  I spent a significant part of my recovery worrying about my Dept. of Geeky Science because I knew I didn't leave anyone trained well enough to take over for me during my sudden absence.  I couldn't wait to get back to work.  

When I think of who I am, it's wife, mother, coordinator, friend.   I love my job.

So could someone explain to me why I'm having such a hard time going to work each day?

The first few weeks, it wasn't a problem.  I looked forward to going into work, and relished the challenge of getting back on track and catching everything up.  It took me awhile, but now I'm working full time again, and am working on getting things caught up.  I'm making pretty good progress on that.  I have more good brain days than foggy brain days now, and I don't feel like it's a struggle to comprehend the various tasks I need to do each day.

Yet when I wake up in the morning, I hit the snooze button more often than I should.  Once I finally accept that I have to get up, I then have to talk myself out of bed so I can get dressed to go to work.  Driving to work is no longer the time I spent going through my to do list in my head and planning my day.  Rather it's the time I try to pump myself up with enough enthusiasm to do a good job once I get to work. 

I find myself thinking of how much longer I have until I can retire.  Currently, I have to meet the "rule of 80" in order to retire with full benefits, and that won't be for another 5 years for me.  I used to think that being able to retire at 53 would be awesome - I'd still be young enough for the hubs and I to really enjoy retirement.  Then I was diagnosed - and now I wonder - can I even count on being around in 5 years? 

I wonder if I really want to spend these next years working at a job where I don't have the same joy as I used to.  Yet my family's insurance - including my own, which is critical now - is through my job at Mid Size University.  If I left my job, there's not an insurance company out there that would take me on - not with a Stage IV ovarian cancer diagnosis.  The hubs has his own health issues - he probably couldn't get insured either.  So whether I want to stay working or not - I really don't have a choice in the matter.  Perhaps that's why I've lost my joy.  It's hard to feel joy in your work when you know you are basically trapped.

Or it could just be because I'm having a hard time adjusting to this life after treatment.  You spend months fighting against a disease that wrecks havoc with your body, your mind, your family, your job - then suddenly it's over and you have to re-focus.  Somehow it's hard to see setting up a new phone system as important after fighting for your life.  Go figure.

I'm hoping this is temporary.  I'm hoping I can find my joy again.   I don't want to be that lady that forces herself to go to work.  That scares the students and faculty because she's such a grump.  I want to be the one who enjoys the people she deals with every day - who welcomes visitors to her office, and goes out of her way to help the students complete their degree, to help the faculty provide a top notch education to those students, and to help the alumni in any way she can.  The one who makes her chair look good.  I used to be that lady.  It used to be effortless. 

I hope that someday soon, it will be again.  Until then - I fake it.  I go to work, put on a smile and do what I can.  It's all I can do right now.  

 Guess I won't be taking down that "Beware!" sign off of my door anytime soon.

Freedom

I've written before about my vanity.  I've written about why I wear scarves instead of hats.  I've written about my fear of letting the world see my now nearly bald head.  Today I want to talk about the public's reaction to those of us with cancer.

I haven't really talked it about it much.  I haven't discussed how wearing a scarf out in public immediately brands you as someone with cancer.  It does.  When you wear a hat in public, especially a baseball cap, there is always the possibility that you just had a bad hair day.  But a scarf - that's your badge, your identifier.  Wearing a scarf in  public practically guarantees stares, sympathetic half-smiles, or those well-meaning looks of pity.  Total strangers will ask you what type of cancer you have, and what your prognosis is.  And when you come across another scarf wearer, you share a look - you too?  Yes - me too.  It didn't matter what type of cancer we had - we just knew we were part of the same tribe.  The tribe of fighters.  Of survivors.

I didn't like the stares, but I never minded the questions.  I've never shied away from answering questions, and encouraging conversation about my type of cancer.  Part of that is because I'm just not that secretive a person (as you might have noticed here).  Part of it is because so little is known about ovarian cancer, and I think it's important to share what I know about the symptoms so that maybe someone else can get diagnosed early, and not have to go through what I've had to go through over the last 8 months.  Part of it is because many of those who know about ovarian cancer think it's an automatic death sentence, and I want them to know it's not.

Since I'm currently not undergoing chemo, my hair is growing out.  It's still pretty short, but it's coming in thick.  I'm still  hoping for chemo curls.  It's gray - good gracious, it's gray.  But it's growing back.  Now that it's summer and I have a bit of hair, wearing a scarf is hot. Hot hot hot.  One day last week, after about the 15th hot flash of the day, I pulled that scarf off and didn't put it back on.  I drove home without out it.  And I decided I was done with it.  Done with wearing that badge of cancer.  Done with hiding my head. 
Done with being only seen as cancer.

Since then, I go about bare headed.  Guess what?  I don't get stared at as much.  It's like without the scarf, I'm just a normal unremarkable person again.  Granted, one with very short hair, but just your average everyday gray headed chick.  I was so sure that I would be stared at more.  I had no idea it would be the opposite.

I had heard that going around bald was freeing.  I thought they meant it was just being free from all the styling and grooming.  I had no idea it freed you from the stares.  From the badge.  From being one of the cancer tribe.  I'm not real sure how I feel about that.  Yet I know one thing.

I don't miss that scarf.