When I Was 14

The summer I turned 14, we moved to a teeny spot on I-5 in Washington State called Smokey Point.  It was a gorgeous spot just north of Seattle, between Marysville and Arlington and a short distance from Twin Lakes.  I have fantastic memories of Smokey Point and those lakes - there was a fruit stand across the highway, bike trails down to the lakes that were lined with wild blackberries, and no matter what people tell you about the Pacific Northwest, people - the weather there during the summer is perfect.  It's  beautiful.

We thought nothing of walking a couple of miles to the general store up in Lakewood, or across I-5 to the fruit stand or the burger shack across the road.  We walked all over everywhere back then (although now looking back I wonder what the hell our parents were thinking- that was smack dab during the middle of when the Green River killler spree!) and I often wonder if our generation was the last one to  truly enjoy a "leave it to beaver" childhood. 

Today - a kid the same age I was when I lived in Smokey Point walked into a high school that many of my friends went to school at just up at road in Marysville and shot 6 kids, killing 2 of them and himself.  Seeing the school on TV just blew my mind.  I remember going to the Strawberry Festival in Marysville.  My first ever track meet was in Marysville.  I had been in that school when I went up there to see my friends graduate from Washington State.  I played on my first video game at Marysville-Pilchuk High. 

I have the hardest time comprehending how a kid from Marysville could do something like this. I still think of that area like Mayberry or Walton's Mountain - how can someone there feel like this is their only choice?  I was 14 that first year I went to school up there in Lakewood, and honestly I felt pretty lonely that fall - all new people I didn't know all that well, since I had attended 4 different schools the year before, they weren't sure which classes to put me in (and it turned out I was in the wrong Math class for sure - luckily mom got me switched out of there after the first 6 weeks).  But it did not occur to me that things were that bad.  I was living with my family in a travel trailer, and I think back on it now and it might have seen like hard times looking from the outside, but for us it was an adventure. 

He was 14.  I was 14.  I understand it was nearly 30 years apart, but how did things turn out so sad?  So desperate?

I don't have an answer - just an overwhelming sadness.  One of the sweetest people I met that year - when we were 14 - still lives in the area, and her son attends school near there.  They are just reeling tonight.  Would you join me tonight saying a prayer for everyone in the area?  Somewhere there are parents tonight lost and grieving tonight - and kids trying to make sense of what happened.  They should be enjoying homecoming tonight - watching the class homecoming floats during halftime, fiddling with their homecoming mums and looking forward to the homecoming dance.  Not sitting at someone's house wondering how this happened?

Not that any of us knows. 

(I am going to try to blog again tomorrow to update you all on my treatment and how I'm doing. I just had to get this out first)

Precious moments

I've been kind of nervous about today.

Last week, I had a couple of tests run to see what kind of condition I was in.  In addition, I had to make copies of the paperwork my oncologist had completed and provided to support my disability retirement application, so I planned to read through that as well.  Today was the day I expected to have to face some hard truths - and I assure you, I was scared.  I spent all weekend planning for the worst so that when I read it I wouldn't be devastated and would be able to handle it.

Because expecting the worst is just how I roll, y'all.  If you expect the worst, then either you're all prepared when your expectation is met, or your happily surprised when it's not as bad.

I'm happy to say, I was happily surprised for the most part.

Not that there aren't a couple of things that weren't happy news.  There appears to be something on my liver that they aren't sure what it is - and I'm pretty sure while I had a teeny spot there previously, this is new.  And my lungs are working at 50% capacity, which isn't good.  But other than that - no masses, nothing else showing up other some slight thickening and a small amount of abdominal ascites.  To top it all off, after 5 days, when we went to drain my pleural effusion, we hardly were able to drain anything.

All in all, it's good news.  Not great, but good.  I'm bummed my lungs are working so poorly, but my PCP wants me to see a pulmonary doctor to see if we can get them working a bit better.  I'm not sure about the "thickening" but I haven't seen a copy of the report  yet, and it's likely that maybe they are referring to something that has been seen before.

Advanced stage cancer patients like myself are always looking for the silver lining.  To focus on the good news, and find a way to accept the not so good news.  When you are constantly facing down the big C, you can either let all the doom and gloom take you under, or you find a way to make the news work for you.  As a glass half full kind of gal, I try to stay realistic but still positive.

I was having a ton of trouble doing that on the Gemzar. I felt so horrible after a dose, and after the shots to boost my white blood cell counts I just wanted to give up.  I was constantly battling the feeling that there was just no point to all this, and that I just couldn't keep fighting.  I spent a huge amount of time near tears, and it took nothing to tip me over the edge.  Pair that with the fact that crying tends to make breathing oxygen through a nose tube difficult, and you have a recipe for "Mysti don't play that."

The hubs and I spent some time in discussion, and after realizing just how much worse my breathing was after the last two doses of Gemzar, we made the tough decision to discontinue that particular drug.  My CA-125 has continued to rise while on it, and although it appears to have finally put a end to the pleural effusions at last, it just isn't worth it.  I'm already afraid that my poor lung function will prevent me from getting on a clinical trial, and I just can't risk it getting any worse.  So that's that.

I haven't had a chance to talk to my doc about going down to MDA for a consultation/see about a trial yet.  I don't see her again until the first week of October.  Her nurse has already told me that they plan on switching me to Doxil since I won't do Gemzar any more, and that terrifies me as well.  Doxil has some wicked side effects.  But I'm thinking that maybe we will hold off on that until after we see the doctors at MDA and see what they might have for me before a decision is made on that.

So that's where we are health wise.  On the homefront, we have had a crazy amount of rain over the last couple of weeks, and my cantaloupe vines have bit the dust due to whiteflies and fungus, and some of the watermelon vines and the cucumber vines are thinking of following suit.  I'm glad I made the pickles I did when I was feeling better because I don't know if I'll make any more.  I'm enjoying the seriously tasty watermelons we've picked from one of our volunteer "I sure don't have any clue what kind it is, but it sure is healthy!" vines, and what few cantaloupe we have been able to save.  We're also sharing with everyone we can because these are big watermelon, and that volunteer vine has a whole lot of melons on it, not to mention the couple we planted have a fair amount on them, as well as the other type of volunteer vine on the far end of the field.

My tomato plants finally put on fruit, and I'm hoping I get enough to make a batch or two of hot sauce.  It would help if it would warm back up around here for a couple of weeks, but we'll just have to wait and see on that.

I totally downloaded an app to create To Do lists on my Kindle in hopes that having a list to work from each morning with get me to do more than see how many episodes of L&O:SVU I can watch each day.  I just feel better if I move around more, so that seemed to help today and I'll just keep that going.

It's just taking things day by day.  Finding ways to make each day have purpose, and to spend time with my boys or my husband when I can.  These days are precious - whether you know how many you have left, or if you are guessing, or even if you just assume you have a plethora of them in your future.  They are still precious - and I'm trying to make the most of them.

Here's hoping you do the same.

Life After

So here I am - in my first week of not working.  So far it's been spent sleeping until 9 am, then watching Law & Order: SVU while checking Facebook, then lunch with friends, then a shot to build my white blood counts.  It's also been trying to adjust to wearing oxygen 24/7, and trying to figure out how to balance the rest I need with being active enough that I don't lose any more stamina or strength.  That's the tough one to figure out. 

The whole process is just weird - after all, I've worked steadily since I was 18.  Being without a job is scary and just odd.  I wonder how long it will be before I start climbing the walls?  Or will I become obsessed with seeing every episode of Law & Order in all of its incarnations? 

On top of all that, my CA-125 continues to rise, although the fluid around my lungs seems to have gone down significantly.  My oncologist wants me to try one more cycle of the Gemzar, and if the CA-125 hasn't gone down (and the nodule she's able to feel during my physical exam hasn't gotten smaller), then she is all ready to switch to yet another drug.

While I'm glad she's not waiting forever to try something new, the fact is we are running out of drugs.  And since starting the Gemzar, we have seen my lung capacity diminish to the point that I have to be on oxygen.  Since I'm unable to have any platinum drugs with any of these other drugs, it cuts our options in half.  And I'm not so sure I'm ok with just running through the drugs she has in mind then just saying that's it. 

I'm thinking maybe it's time to see about clinical trials again.

Last year when we went down to MD Anderson, my only options were trials that required me to be there every week, for 3 or so days a week.  That just wasn't an option with youngest son still in high school.  But youngest son is now in college.  Eldest son is also in a better place than he was last year.  Now I'm not working - so I could be there weekly if need be.  So we may be looking at going down to see if there are any trials I qualify for now. 

I worry that I've had too many lines of treatment - that there aren't any trials for women with such persistent ovarian cancer at MD Anderson right now.  But it is worth a try - it's worth seeing if there is anything that might affect this stubborn bitch trying to take over my body.  To see if I have more than the 8 - 12 months I would have left if I kept trying drug after drug that didn't work.  Because my goals haven't changed in the last two years.

I still have grandbabies to see born - and to hold.  That means lasting a helluva lot longer than another year.

Wish us luck.

Identity

In the summer of 1990, I was working for Kelly Girls when I received a call to come interview for a job at Mid-Sized University.  I had wanted to work for Mid-Sized University for some time, as I knew they had excellent benefits, including generous sick and vacation time on top of the best paid holiday schedule in town.  I had had a couple of previous interviews at M-SU, but nothing had panned out as of yet.  I had a good feeling about this one though.

This one was in a department located right above where my beloved Aunt Linda worked.  An entry level position in Computer Science - and my last two jobs were computer oriented (ok - data entry, but still).  My interview went perfectly, and sure enough - I was offered the job.  So in the fall of 1990, I started a job that would define the woman I would become.

When I started that job, I was still a girl practically.  Engaged, but not married, no children and still trying to find out who I really was.  Over the years I married the Hubs, had two children, and was promoted several times.  In the process I grew up.  I became a woman who had confidence in her abilities to handle any job given to her, of any situation, to take on new tasks and experience without freaking out.  I had lucked out you see.  I found my place.  My niche.

Not many people find the job they are meant to have when they are 25.  I got to crunch numbers, to work with students, to write a newsletter, to do layout and play with graphics, to work with webpages, and to work with alumni.  When I started, the department had 10 faculty, and maybe 30 grad students.  As I leave it's grown to 15 or so faculty, 150 grad students, and instead of two office staff, there are four.  I was so very very lucky to have been hired into a department that took care of me as well as I took care of it.  They have been my second family.

Today, I turned in my resignation.  It became increasingly obvious over the last few weeks that I am unable to perform my job any longer.  I had resisted this decision for months - how do I leave the job that has helped define who I am?  How can I walk away from the department who made sure I had a place to return to after the birth of my children, after recovering from cancer - hell - even after I tried to leave them for a couple of years?

I had to do it.  They deserve someone who can do the job fully - and that is not me any more.  I will work part time this week, then they will start a  new chapter without me.  It is breaking my heart, but I know I need to focus more on me and less on them.

Now how to I figure out how to be Mysti without them?

Playing Farmgirl

As everyone knows, one of the things I love to do is garden.  This year, the only way we've been able to have as large of a garden as we have is due to my push to adopt no-till gardening several years ago, and my husband's willingness to adopt the "mulch it all!" method this year.  Other than a couple of hours doing a big weeding at the beginning of the summer, it's only taken about 10 - 15 minutes to weed the garden each weekend.

This past weekend, we finally started getting  something back for all this watering/weeding/mulching.  We picked a large bowl of cucumbers, pulled some onions, and about half a large bowl of green pintos.  Woohoo!

Before my diagnosis, I could pick all of that by myself, take in the house and have a batch of pickles and a batch of green pintos canned by bedtime.  I've had to learn to make adjustments since my diagnosis - and since the chemo started hammering on my bone marrow so hard.  So now it takes both myself and my husband to pick that bowl of cucumbers, pull a few onions and that half bowl of green beans.  Then I spend the rest of the afternoon cleaning and snapping green beans, and slicing cucumbers.  Instead of adding onions and salt and draining and canning 3 hours later, those cucumbers had to sit overnight.  Instead of me washing 12 pint jars and 5 quart jars, my husband had to do it so I could rest.

And the pickles got finished Sunday, and I've finally got the green beans in the canner now.

It's frustrating - remembering how doing both pickles and green beans all in one day used to be so easy.  Now if I didn't have my husband to help with washing jars and lids, filling canners with water, and making sure all I have to do is fill the jars (and make a little brine) and put the lids on, there is no way I could do this.  I can no longer gleefully proclaim that I canned it all by myself.  Tonight when I got home, the quart jars were in hot water, the lids were simmering, and after I rested for half an hour or so, I was able to go fill 'em up and start 'em canning.

I'm so very tired of not being able to do the things I took for granted two years ago.

But despite the whining, we did manage to get the pickles done (12 pints of bread and butter!).  I'm learning to utilize teamwork a bit more often, and I'm trying to not be bitter about what I can no longer do on my own.  I will make more pickles - kosher and regular dill, more bread and butter - and I will can more green pinto beans.  We pulled most of our onions, and we won't have to buy those for a couple of months.  This coming weekend, if I feel up to it, we'll dig up our taters and start curing them.  This winter we will enjoy the fruits of our labor.

Even if I contribute less and less labor to it.

When a Chemo Quits Working

So.

Here it is July, and I haven't written anything since April.  I thought it might be time to explain why.

You see, back in April when I was worrying about whether the Taxol was working - it wasn't.  After 2 months of being just under the normal limit number for my CA-125, it went up.  And the next month it went up again, so it was decided that the Taxol was no longer effective on my cancer cells.  Needless to say, I had a minor freakout about it - and I just didn't know how to write about it. First I was waiting for my youngest to graduate high school, then until we told the boys and my folks what was going on.  Then I was waiting until my new oncologist and I made a decision on what to try next.  But it's been too long since I wrote, and I'm feeling the effects.  So here it is.

My new oncologist is a gynecologic oncologist, and she is VERY up on the latest methods/chemos/etc for my type of cancer.  So she decided - even before we realized the Taxol wasn't really working anymore - to take some of the fluid that I'm draining from around my lung and send it off for testing - first to see whether or not there are cancer cells in the fluid, second to see what chemos it responds to.  By the time it was obvious that Taxol wasn't working anymore, she knew that yes - there were still cancer cells in that fluid, and more importantly, she knew which chemotherapies that those cancer cells were responsive to.

The good news is that I have several options.  There are other taxil chemo agents that I can use later, as well as several other drugs.  She started me off with Topotecan three weeks on, one week off, and Avastin on weeks one and three.  Unfortunately, after two weeks, the Topotecan kicked my blood counts into the dirt, so no chemo last week!  I see her next week and we'll decide if we're going to change to two weeks on, two weeks off or lower the dosage and stay on the three week schedule, or whatever else she thinks might work.

It's unsettling.  Coming at the end of a week that included the Oncology Advisory division of the FDA voting against fast-tracking Olaparib for ovarian cancer treatment (hmph) and a delay of an event I had been hoping to get done next month, it was not what I wanted to hear.  It did explain why I was so tired at the end of the day last week.  Anyhoo - that's where I'm at.  I am happy to say that the fluid around my lungs that had been increasing since the end of Taxol seems to be decreasing just a bit lately - so I'm hopeful the Topotecan is making some headway against the cancer.  My scans in June were still clear, so whatever is going on in there is still pretty small.  I'm not getting my chemo free summer, but having a week off every month will be heaven.

In other news - as I said, the youngest graduated high school.  My garden is growing, my flowers are so pretty and just make me smile every day:

We've had plenty of rain this summer so far, and this morning, our new cow dropped her calf!  So we officially have a herd!

(Click to see cows!  And babies!)

 

The hubs and I took a long weekend trip to Cloudcroft for our anniversary last month, and we're just taking things day by day.  I'm going to try and write more often, but to be honest - when I get home from work I'd much rather work in the garden or yard for a bit before I sit down to catch up on Facebook - or reading, much less writing.  We'll see.  

So here I am - doing my best not to just survive - but to thrive.  So far - so good.

My Season of Discontent

The wind is blowing again - as it has been for the last several weeks.  Living in the West Texas Panhandle, I'm used to wind - but it sure is getting on my last nerve lately.

It may be because things are stressful at work.  One of my staff left at the end of March, and I'm having to do part of her job as well as mine.  Part of me loves it - I'm getting to advise students, and I love working with them.  That part of me is having a ball.  But the other part of me - the part that remembers that I'm fighting a sneaky type of cancer - knows that I'm putting in too many hours at work, and worrying too much about whether the students are getting the attention they deserve in a timely manner.  That side is also pretty concerned with how in the world am I going to keep up with my regular job at the same time.

So there is that.

There is also my ever-present worry about my health - when we got my blood test results back at my last treatment, I only had one result that wasn't normal.  Somehow, all of my blood work has improved over the last few weeks.  You would think this would make me happy.  As a worrywart, instead all it does is make me wonder - if it's not kicking my blood counts down, and not making my hair fall out, is it killing the cancer cells like it's supposed to?

Yeah yeah - quit looking a gift horse in the mouth, and just be grateful.  Easier said than done.

Of course, it might be that my finger tips are starting to hurt more and more the longer I receive treatment.  My nails are shot - full of ridges and blotches, and I'm pretty sure a couple of them intend to fall off in a matter of weeks.  It's really not a side effect I'm in the mood for, but it is a possibility with the Taxol.

Or maybe it's because the Dallas Stars are getting their butts kicked by those damn Ducks tonight.

I'm struggling with envy right now.  More and more I am hearing of ovarian cancer patients that were Stage IV at diagnosis as I was - that went into full remission - and there are more and more of them that stay in remission for years at a time.  And I envy them - oh how I envy them.  Remission!  That glorious state of being where you can believe that you have beaten the beast.  That you will not die in a year.  Or two.  Or three.  Instead you will be the miracle...the statistic breaker...the one who lives 10 years and beyond. 

I so wanted to go into a full remission.  When I read those stories I feel cheated.  Why didn't *I* get a full remission?  Why didn't *I* get a year - or two or ten - of remission?  Of life without chemo and constipation and nausea and steroid weight gain and no eye lashes and tubes?  Why why why???

I don't know why.  And I certainly don't know why NOW I'm fighting the green monster.  I didn't spend that first year wondering why I got ovarian cancer.  It was the luck of the draw - and bad genetics.  It is what it is.  It did no good wasting time on wondering why.  I'm not sure why I'm struggling with it now.

I wonder if it's just not my mind's way of avoiding the real issue - what comes next?  I'll be switching to a new doctor and treatment center this summer, and taking a chemo break.  Instead of looking forward to it, I'm kind of dreading it.  For two months this summer, I won't be getting treatment.  The plan is to get my last tube removed, and to get some dental work done, and to give my body a break.  It should be something to look forward to, but all I can do is think about what will happen without the chemo - the last time I had a chemo break, my numbers started going up immediately.  Is it going to happen that way again?  Is switching doctors a mistake?  Will I be as happy with the new treatment center as I was with the one I use now?  Are the chairs as comfortable?  Will they bring me drinks like they do now?  Will they pay as close attention as the nurses do at my current center?

Is all I have to look forward to is a lifetime of chemo and bloody noses in the morning and painful finger tips?

I don't want to be envious of those who celebrate their years of remission.  I want to be happy for them, and look at them as reason to hope.  But somehow these ugly envious thoughts creep into my head instead, and I don't know how to stop them.  I try to be grateful I'm still here - 18 months since my diagnosis.  I've already beaten some odds.  It's my intent to beat even more.  To be one of those that declares I'm Still Here - 5 years from diagnosis!  10 years from diagnosis!  15! 20! 

*sigh*  I hope I'm not fooling myself.

Tired

I mentioned the other day that I was having a hard time finding something to blog about.  The fact is, I'm just avoiding blogging because I don't have super happy stuff to blog about.  I've been doing chemo since last October, and frankly, I'm tired.

I'm tired of spending every Friday at the cancer center.  I'm tired of being constipated for 5 days out of every 7.  I'm tired of constantly having to wipe or blow my nose due to the Avastin.  I'm tired of the taste of blood in my mouth from all that drainage.  I'm tired of constantly worrying if the chemo is working, if I'm going to go into remission, if that weird pain in my chest another blood clot or a tumor or just a weird twinge.  I'm tired of the cellulite that has taken residence on my thighs because I don't have the energy to work out every day.  I'm tired of having to draw on eyebrows so I don't like a boy. I'm tired of having short gray hair. I'm tired of not being able to sleep more than 4 or 5 hours at a stretch.  I'm tired of having circles under my eyes so dark that it truly looks like my husband tuned me up.  I'm tired of gaining weight, of hot flashes, of food tasting too salty or too spicy, of the constant craving for chocolate.  I'm tired of trying to brave, inspirational, and chipper.

I am so very tired of having cancer.

I know I could have it so much worse than I do.  I have family and friends that love me and support me.  I have a job that provides me with insurance that has made all this treatment possible.  Sometimes I feel like such a whiner for feeling this way.  But even if you're not at death's door, after a while - having cancer wears on you. 

Those who haven't had cancer - or haven't had dealings with someone with late stage cancer - look at me and see that I'm feeling pretty good compared to a year ago and think that my battle is over.  But my battle may never be over.  I may never go into a full remission.  I might - but the odds are against me.  Sometimes I think people don't know how to deal with someone like me - the cancer patient who can't claim they are cured.

I'm not sure I'd want to hang out with someone who just can't do the things she used to.  But I wish I knew of some way to tell the people I don't hear from much anymore that they are missed.  That I'm sorry that I can't just go back to who I used to be.  My life has changed forever.  I will never again be the chick who can party until the wee hours, or that can spend Sunday morning loading a pickup truck with load after load of hay. 

I wish I knew how to tell them that I miss that chick too.

I've said before it's not all moonlight and roses.  I'm not helping anyone if I only post when I'm all happy and chipper.   I would hate for someone to come across this blog and see nothing but unicorns and rainbows and get down on themselves because they are having more blue days than they know what to do with and feel like they're doing this wrong.  There is no wrong - we all have to deal with it in our own way.  And I bet I'm not the only one who gets so damn tired of having cancer.  It helps me to write it out - it's a way for me to figure out why I feel the way I do, and a way to express those feelings and get them out of my system.  If it helps someone else someday, even better.

It's unrelenting, this having cancer thing.  It never goes away.  Not for me, and not for my family.  I wonder if it would be easier if there was any real hope that I could actually be cured.  I'll never really know - I'm to look at ovarian cancer as a chronic disease that I can treat but not cure.  Like diabetes or rheumatoid arthritis.  I'm doing my best to find a way to accept that gracefully.

But damn.  I'm just....tired.

It's The Little Things

When you deal with a chronic disease as I am, eventually you find yourself being happy about the weirdest things.  Sometimes it's having a day without pain.  Sometimes it's being able to navigate your way through a difficult problem at work without having to ask your friend that works in another department 40 questions because your chemo brain isn't blocking all of your intelligence.

Sometimes you're happy that the barium you had to drink for your CT scans put an end to that almost constipation problem you've been struggling with since you started chemo again.

Yes.  That's right.  I said it.  For the first time ever, the barium got things 'moving well' shall we say.  Who am I kidding?  Let's be clear.  I might as well have had a cleanse.  I guarantee they got a good look at my colon today because there wasn't anything in there to block their view.  Nope.  Hell - they could do another one tomorrow and STILL have a great view because  dayum - I'm empty!

See?  It's the little things.

It's kinda bizarre that I'm discussing such things on a public blog.  I never used to discuss such things.  I remember the first time my husband asked about the last time I had taken a crap and I looked at him like he had lost his mind.  Why in God's green earth was he asking about THAT?  We didn't discuss bowel habits in my house growing up.  Unless you were my dad.  I'm pretty sure we all knew way more about my dad's bowel habits than we ever wanted to.  But isn't that true of most families? Anyway - I certainly saw no reason to discuss my bowel habits with my BOYFRIEND - it didn't matter how long we had been dating.

Now look at me.  HA!

But that's the thing - with ovarian cancer, the fear of an obstruction is a very real thing.  I've been SO lucky that I haven't any any bowel involvement with my cancer - no tumors that we've ever known of, no bowel resections during my de-bulking surgery, no obstructions - partial or otherwise.  Many women do have bowel involvement and have to have large portions of their bowel removed, or colostomy bags.  We're constantly on the watch for the signs of an obstruction - because that could mean that the disease is progressing.  That a tumor has worked its way into the bowel.  Or that one has developed and grown large enough to compress the bowel or colon...

So - I'm sorry and I hope you weren't eating when you started reading this.   If nothing else, take the time today or tomorrow and see what you can think of to be happy about that you don't have the nerve to share with anyone else.   Then share it anyway and see if anyone still thinks you're inspiring.

Muahahahahaha!!!!

(No - really - I wasn't trying to ick anyone out.  But if I'm going to be honest, I  might as well be honest about everything, and this is totally a big topic for many of us with ovarian cancer.  That dreaded obstruction is often what finishes us off - eventually there just isn't anything else to be done.  So forgive me for being tickled that for once I don't have to worry about taking stool softeners or fiber capsules for a day or two!)

In other news, the cow formerly known as Steak is eagerly looking forward to the arrival of Son of Steak.  I believe she is also eagerly looking forward to her new half barn that MDH is going to build for her.  At the moment, that barn consists of 9 poles set into the ground, one of which is a good foot shorter than the other two in that particular row because MDH didn't stand outside and watch the men who were setting the poles in the ground.  Now he has to decide whether to try to raise that one pole up a foot, or just to cut a foot off of the other two.  I vote for the cut - not that he always listens to me.

The hubs has also decided that since our Java hens were such crappy mamas, they have a future in our freezer and he will be buying a new breed of chicken to replace them.  As long as he doesn't replace my Americaunas that lay the blue and green eggs, that's fine with me. And of course, as long as he is the one who gets them prepped for our freezer.

Dove continue to line up on our back yard fence and our back yard trees - taunting the hubs who did not get to go dove hunting this year.  He's also figured out just when he can hunt geese and woe unto any Canadian geese that fly too low over Digbyland.  They just might find themselves being marinated in Fred Meske's secret goose sauce!

In another couple of weeks it will be time to start seeds around here for the garden. Every year I start seeds, and every year I'm lucky if 2 out of the 30 - 60 seedlings I nurse make it into the garden.  Or survive the garden.  But this year I'm determined.  I will have heirloom tomatoes!  And cucumbers so I can make pickles!  I will!  Maybe.

So that's what's going on in Digbyland - what are you up to these days?

(By the way - my scans are still clear. Woohoo!)

Miracles

(I completely understand that not all of my friends believe as I do - and as I've mentioned before, I'm down with that.  If you aren't comfortable reading about a Christian's struggle with her faith, feel free to just click away now.  It won't offend me at all.  I just ask that you respect my choice as I respect yours.  This is a part of what I'm going through now.)


Sara.
Becky.
Allison.
Dr. S.
Diana.
Nancy.
Mike from NM.
Lynn's mom.
Megan's mom.
L.
M.
The sweet lady who likes my scarves.
The man who likes to gamble.
The man that Monty knew from  his old job.
The professor from BA who's name I've forgotten.
The sweet lady who had the trees last year that she had to keep in her garage to protect them from the freeze.
The nice lady I met in WalMart who had the cool head wrap.
And myself.

These are the people who I pray for healing every night.  Then I pray for continued health for a slew of others - people in remission, or who are recovering from other ailments.  Not everyone listed up there have cancer - some have other chronic illnesses.  But I pray for them all.

Sometimes in the morning.  Sometimes it's at night.  Whenever I have some quiet time to go through my list.

I also pray for my boys - that they continue to meet good people, and make good friends as they move into adulthood.  I pray they meet women who can love them as they are, and yet inspire them to continue to try to be better people.  Women that will respect them as I hope they respect those women.  That they find a job or career that they love, that makes going to work a joy rather than a chore.

I would love you to believe that I do this every day without fail.  But that would be a lie - I try.  It's my intent to do this every day.  But some days I run out of time in the morning.  And some days I forget to say my prayers before I go to bed.  And some days I fall asleep as I'm working through my list.

I always try to start my prayers with thanks for the day before, or the day that just finished up - to remember to be thankful for the good things that have happened - whether it was checking items off my to do list, or seeing a beautiful sunset.  Whatever I can think of to be grateful for, so that I don't always focus on the negative, the scary.

As  work through this Beth Moore book, I'm learning new things to consider as I pray.  One of those is not being afraid to ask for the big things.  I think a lot of the time I figure it would be presumptuous of me to ask for things for myself - I tend to instead ask for health, healing, etc for my family and friends.  I'm learning that may be the ultimate conceit - a falseness that doesn't so much show how humble I am, but rather my lack of faith.

See where I list myself on that list of people that I ask for healing for?  Why is that?  Why do I put myself last?  Don't I deserve to be a little higher on the list?  Aren't we told as mothers that we should take care of ourselves first so that we are able to care for our families?  Not that we do that.  Nope - it's always worry about the rest of the family first - we'll rest when we're dead.

That's just a wee bit close to home for me.

So I'm working on that - on trying to find a way to work myself up that list.   To accept that my health, my cure, is just as important as anyone else on that list.  To accept that there is nothing wrong with taking care of yourself first.

To accept that it's ok to ask for help.  For a miracle.  For long remission.  For a cure.

To really believe in miracles in this age of science and disbelief.  To have the faith of a child.

Easier said than done. 

2014

Hmm.  I never imagined that my first post of 2014 would be on the 21st.  It's been a weird month for me.  At the beginning of the month, I had another chemo treatment, and we tried once again to give me carbo - extra steroids, and more benedryl - in hopes to de-sensitize me so that I can still get one of the most effective chemos for my type of cancer.  Alas, within minutes of starting the carbo, my tongue started tingling again, my heart started racing, and even though they were watching me and stopped it immediately, my nose swelled shut again.

*sigh*

So - I don't know if I'll ever have carbo again.  And that scares the crap out of me.  My CA 125 only went down 6 points between the last two chemo sessions, and I worry that means without the full carbo infusion, we're not beating the cancer back as much as we'd like.  I haven't re-developed acites in my abdomen, but I still have the fluid around my lungs.  I thought we had that on the run, but the last time my husband drained it, it was significantly more fluid than the previous time.  In addition to all that, I've had much more discomfort around my middle the last few weeks.

Whine whine whine.

Tomorrow I'll be having CT scans of chest, abdomen and pelvis.  So maybe we can see what is exactly going on in there.  I haven't had scans since last October, so I am very curious as to how things look.  I keep hoping that once again it'll be a scan with no new evidence of metastic disease.  Wish me luck.

I've struggled keeping a positive attitude the last couple of months.  Having fevers every time I hit those compromised immunity days every round of chemo is a double whammy of feeling like crap and worrying that the doctors are missing something when they try to figure out what is causing the fevers.  This last time I was prescribed preventative antibiotics in hopes I wouldn't have a fever.   It certainly delayed the fever, and it was just a low grade fever that only lasted a few days, but I still got a fever.  Again.

This constant feeling like crap wears on you.  It frustrates me to no end to only have a few days out of every 21 that I feel like doing anything.  I miss way more work than I'd like, but there are just some days I can't make it in.  I still feel like I'm letting down not only my boss, but my staff and faculty as well.  I've been told that some of my faculty are complaining.  But what can I do?  I'm trying my hardest to be at work as often as I can.  To get as much done while I am in the office as possible. 

I used to rarely miss work.  I rarely got sick, and I had to be pretty sick before I called in.  I wasn't the employee who called in with a sinus headache or because I had cramps.  If I called in, I was most likely running a fever or hurling.  Now I call in because I'm so fatigued I can barely function, or because I'm so nauseated from chemo I can't comprehend trying to drive into town. 

Part of this adjusting to the new normal I guess.  Trying not to assign scary meanings to every ache, pain, lump or spot.  Trying to remember that God's plan doesn't necessarily mean I'm supposed to be his example of grace under pressure - or anything worse. 

Those who know me well know that I have a strong faith in God.  During this recurrence, I've struggled holding onto that.  I've struggled with believing that there are still miracles to be had.  I want to believe that - of course I do.  But I feel like for some reason that's God's answer to my prayers might be no. 

To help with that, I've been working my way through a Beth Moore book.  A devotional of sorts.  I'll be honest - I have it on my kindle because it was free this month.  But working through it these last couple of weeks has been fascinating - giving me a different look on how my relationship with God works - and me questioning if I've been putting enough into it.

For those of y'all who don't buy into God, or who worship a different diety, feel free to move skip all this rambling of God and faith. It won't hurt my feelings a bit.  This blog is an exploration of how I'm working my way through my cancer and my life in general, so there's gonna be some God talk occasionally.

Anyhoo - that's what's going on with me.  As usual, January sucks.  My least favorite month.  Chemo again this Friday.  Not sure what they are going to do - according to my oncology nurse, we'll find out Friday.  I'm not real sure I'm ok with that,  but it doesn't seem like I have much choice.  Keep me in your thoughts, and I hope your January is going well.

I'll just be glad when it's February again.

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. 

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 ;-)

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. 

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.....