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.

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