Tuesday, September 09, 2014

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.

Tuesday, September 02, 2014

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?

Monday, August 18, 2014

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.



Friday, August 15, 2014

In One Moment

From one moment to the next, your entire world can change.

In early October of 2012, I spent my lunch one day laughing and talking with friends and co-workers, with nothing more than the every day cares of a wife and mother on my mind.  As I came back from that lunch, I became short of breath - and my whole life changed.

That was the beginning of my diagnosis - that moment when I realized how short of breath I was, and knowing that I shouldn't be.  It led to me googling ovarian cancer symptoms, then making an appointment with an ob/gyn that was able to start the diagnosis process.  Just like that - I stopped being just a normal, slightly overweight forty-something, and became an ovarian cancer patient. 

A Survivor. 

It's been a crazy couple of years.  I mentioned last time I wrote that my new oncologist was switching chemo drugs since the taxol had quit working.  I had two rounds of topotecan, and my CA-125 kept rising.  So last week, she switched me to gemzar with avastin and we once again started knocking on wood and desperately pleading with God to just let this one work.  Please.  (Ok - that was just me desperately pleading)

This morning, I was told that my white blood count was way too low to do chemo.  The plan was 3 weeks on with gemzar, then one week off.  Being told this morning that I couldn't even do a second dose devastated me.  I felt like my body had decided to take cancer's side - like it wouldn't even help me to save my own life.  It's silly, I know, but it's weird how after a certain amount of time you start to think of your cancer as a cognizant entity, separate from yourself.  You give it its own identity - evil of course.  Because only something evil could put you through so much pain and fear.

The truth is, cancer is just mutating cells, with no mind of their own.  They divide and multiply because that is what they do.  They aren't actively trying to kill you specifically - they just multiply over and over again because...well...they don't know how to do anything else.  Our job is to find some way to stop the cells from replicating, and to kill them out. 

Simple, right?

It's scary to realize that you may not be able to tolerate the drugs that can save you - the drugs that might get your cancer under control, or eliminate it completely.  I had a major melt down this morning, completely unable to control my tears, sobbing to my husband asking why?  Why is this happening?  I try so hard to be a good person - to say my prayers, to be kind, to not cause anyone pain, to be fair, to be an example of how a woman of faith handles this type of diagnosis - with grace, and dignity and without bitterness.  I'm not perfect.  But I try - I really do try.  I have a good heart.  So why is drug after drug put beyond my reach?  Why is my body betraying me?  Doesn't it want to LIVE?

I do.  I want to live.  I *want* to be a warrior.  A warrior queen, fighting off the evil cancer from my body.  I may no longer be able to pull off a Xena outfit.  And I can't do that if my own body won't tolerate the treatment.  In a moment this morning, my whole world view changed, and I felt like I was facing my own mortality for real.

Scary shit, my friends.  Scary shit.

Once I was settled down, and we were able to get my fluid drained off (had a minor blockage when trying to do it last night, so we had to do it at the cancer center), the hubs and I left the cancer center, and after running a couple of errands (ok - he ran them.  Due to my low numbers, I was forbidden from leaving the car), we  headed home.  While he was running errands, I posted a plea on Facebook - asking for prayers from the prayer warriors, and positive energy from everyone else that my white cells would rebound so I could have treatment.  My awesome friends responded.  And I started trying to think of how we would keep fighting - would it be a new chemo?  Should we start looking ahead to going back to MD Anderson?  I got myself back into fighter mode. 

I have never been much of a victim.

Thirty minutes later, on our way home, the cancer center called and told us to come back.  My oncologist had decided that I was to have shots to boost my blood marrow into making more white cells today, and for the following four days.  So I can have treatment next Friday.

Another answered prayer.  Another moment where my world changed in an instant.  From the depths of despair (or at least on the second flight of steps down) to the return of hope.  Hope that I will be able to have this chemo drug - maybe not 3 weeks in a row.  Maybe every other week.  Maybe with the shots I can have it two weeks on, two weeks off.  Hope that I can still fight this horrible disease. 

A return of faith.

(The last two times I've drained, the amount has gone down.  That would point to the gemzar working.  I won't have my CA-125 run again until September, but I'm hopeful that it might go down at last.  It's nice to have hope.  It's nice to have good news again.)







Tuesday, July 01, 2014

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.

Thursday, April 17, 2014

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.


Wednesday, April 16, 2014

Debbie

Sara. Debbie.  Becky.  Allison.  Amy.  Dr. S.  Dr. L. Dr. G.  Nancy.  Lynn's mom.  Megan's mom.  L.  M.  The sweet lady who likes my scarves.  The man who likes to gamble.  The sweet man who reminds me of Angie's dad from hockey.  The man Monty knew from his old job. The professor from BA who's name I've forgotten.  The man who has had all the chemo.  The sweet lady with the trees.  The lady from WalMart. And myself.

When I was diagnosed, I didn't really know anyone who had ovarian cancer.  There was one lady who was a friend of a friend that I talked to on the phone once, but once I switch doctor's to a regular oncologist, I was just one of many cancer patients with a wide range of types of cancer.  While Sara had some similar symptoms to mine, there are some symptoms that are specific to ovarian cancer - and I had no idea if it was really normal or not.  It took me a long time to find any support groups online, and until I found the message board on Inspire.com, I couldn't find any groups on Facebook either.

It was a lonely time.

I got through it, but when I had my first reaction to carbo this year, I finally met another ovarian cancer patient who was also in her first recurrence.  We both had reactions to carbo on the same day, had second reactions when our doctor tried to de-sensitize us 3 weeks later, and are now currently on the same weekly Taxol/every other week Avastin schedule.  We have treatment on the same day, and odd as it may seem, it's nice to have someone to visit with every week - to compare our lack of side effects, our energy levels, who's hair is growing back quicker (woohoo - I win on that one so far). 

Debbie's experience is different from mine.  Her cancer was a surprise found during a hysterectomy.  It wasn't as advanced stage as mine.  We had the same front line treatment, but she had a little over a year before she recurred. And her recurrence is in her liver and viewable on CT scans - unlike mine that was found via a rising CA-125 and the return of ascites.  They've never been able to see anything on the CT scans.  She's also responding well to our Taxol/Avastin combo - her tumor is shrinking, and she will likely have surgery to remove it in a month or so.  But she's my chemo buddy - and I'm going to miss her when I switch treatment centers this summer.

We share a love of gardening, and living in the country.  We share a craptastic diagnosis.  She's tough as nails though - while I rely quite a bit on my husband and sons to get some of the more strenuous gardening work done right now, Debbie does it all herself.  I don't know how she does it - maybe since she's not working, it gives her more energy to do it.  And while I have gone scarfless for weeks now, she still wears a wig - a great looking one to be sure, but a wig none the less.  She always has all of her makeup on, and actually drives herself home after treatment each week. 

I'm asking that you all add Debbie to your prayer list for a few weeks.  I'd love to hear from her in a month or two that your prayers have led to her tumor shrinking enough that she *doesn't* have to have surgery.  Wouldn't that be awesome?