Monday, September 22, 2014

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.

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


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?