Wednesday, May 15, 2013

What Partial Remission Means to Me

It's been a week since I blogged.

It's not that I haven't wanted to - trust me.  There are tons of things running through my brain these days.  It's just the weather has been wonderful, and my energy level is somewhat better, and I've been doing other things.  By the time I would want to sit down and write, the hubs had the laptop and I was out of luck.

I think I need my own laptop!

Despite how thrilled we are with my test results last week, we know that this isn't over.  I have an appointment tomorrow with the doctor who put my drains in for my lungs to see if he has any idea why I'm still having fluid build up around them.  It has gotten less in the last few weeks, but there is enough around my left lung that by the 3rd or 4th day, I'm short of breath.  I don't have any significant fluid around the right lung anymore, which is good.  My skin on that side is starting to react badly to the constant bandage changing every 3 or 4 days, so something is going to have to be done about that.

See?  I still have issues.  I'm hoping my platelets come up enough that my oncologist will feel comfortable with me having chemo in early June.  I feel weird knowing that right now I'm not doing anything to treat my cancer.  Then I have to remind myself I don't have much cancer left to treat.

It's strange, this partial remission.  Every time I feel a twinge or pain in my abdomen, or back or anywhere I wonder if it's the cancer getting worse, if the chemo isn't working anymore.  I have to remind myself that my scans were clear just two weeks ago.  And that just last week my CA 125 was at 26.  I'm ok right now.  The chances that I've had a tumor develop into a mass large enough to cause me pain in just two weeks are pretty low.  I'm ok.  I'm really ok.

I have a feeling - backed up by reading the stories of other ovarian cancer survivors - that I'll probably spend the rest of my life wondering.  I'm sure eventually I'll get to where every single pain won't automatically lead me to think the cancer is back, but it'll still be there.  With every gas pain, every weight gain, every time I feel short of breath or bloated - I'm going to wonder.  Because I know it can come back.  It can come back in two months - or two years - or twenty years.

I don't want to live my life in fear though.  I want to live it fully.  I want to take the time to spend afternoons with my family, evenings with those I love.  I want to fill my life with laughter and happiness, not worry and fear.  I have things I want to do - my "bucket list" so to speak.  But I wonder if starting to work on my bucket list isn't self-defeating - isn't that what terminal people do - their bucket list?

I'm just not sure how to navigate this partial remission chapter of my life.  There's no guidebook for that.  No educational binder with tips on how to navigate life at the end of treatment.  I still don't have my energy level up to where it used to be, nor my endurance.  I worry that people around me think that because I'm in some type of remission, that my battle is over, and that I'm well now.  When I'm not - I still have a way to go before I'm back to "normal."  If I ever get there - my normal may be different now.  So I don't know when I'll be able to keep my house clean.  When I'll be able to go and do like I used to.  Hell - I don't even know when I can have an adult beverage again. 

But even with all that confusion - it's better than the alternative.  I'm alive.  I'm beating cancer.  I'm surviving.  I'll get everything figured out eventually.  Hopefully my friends and loved ones will be patient while I find my way.

And if they don't?  Well - too bad for them, eh?  They're going to miss a whole lot of fun when I get it figured out!

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