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)

The Digby's Take Houston

So. Here we are in Houston. We have visited with the clinical trial folks, and they don't think I'm strong enough to be on a trial. Most of that is probably due to my lungs not working well these days. They are also sending me to another lung doctor, as well as a nutritionist doc.

Since clinical trials are currently off the table, I also saw the same doc I saw last year at MD Anderson. The last couple of months, my oncologist at home has been telling me that she can feel nodules during my physical exam, which coupled with my CA-125 had her convinced my cancer was not responding to treatment. When I saw Dr Coleman, he did not feel anything. Neither did his PA. Considering last year he didn't have any problem feeling a mass there, it makes me feel like maybe things aren't as dire as we thought.

Needless to say, my doc here had me go for new scans since there was some weird mix up and none of my scans or records for the last year made it here. We brought the report from the chest CT, but apparently it wasn't very detailed (I believe the doc's comment was "well that tells me nothing")  - I'm hoping that will tell us one way or another.

All of that just to explain that we have a plan (which is almost exactly what my doc at home wanted to put me on) but the doc here at MDA will be making the recommendations. And we are going to see about going back to my old treatment center. The folks at the new one seem very nice, but I'm just not comfortable there. I miss Arrington and how it worked. So when we get back home we are going to get that arranged.

Yes - that also means I'll be going back to my original oncologist, but coming down here on a regular basis. I really did like Dr H, but I'm not sure I have confidence in her after seeing Dr C down here. Not only was he sure he didn't feel any nodules, but he was also concerned how quickly we had switched from chemo to chemo. He said that you shouldn't base treatment decisions on just the CA-125.  Some of those drugs might have been working. *sigh*

Yikes. This is getting seriously long. Sorry about that.

So anyhoo - we still here in Houston while the boys hold down the fort at home. We are hoping to get to go home next Wednesday. I am ready. I miss my bed. I miss my house, my herd, my garden, my chickens - an oxygen set-up that I don't have to lug around.

It's the little things.

This morning the hubs is running errands and I'm lying in bed like Lady Mary snacking on Rosemary and Garlic Triscuits. We are supposed to have dinner with the hubs' cousin and family tonight, and with a couple of my awesome alumni and their awesome wives on Sunday. This afternoon we have to go buy me some clothes because for some odd reason I brought 5 pairs of britches and only 3 tops. (Yeah - don't ask - my mind wasn't working - none of the shirts will go with a couple of britches either. ) Maybe tomorrow we'll go to a movie. It's just taking it day by day.

As usual.

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.

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.)