Lucky

I’m one of the luckiest people I know.

Uh, Heather?  Um, you have stage IV incurable cancer.  Remember  that?

Yes…  yes, I do.
Know what else I have?

A wife and kids who I love and adore more than anything.
A family that supports and loves me as much as I do them.
Friends that make me laugh and have my back when I need it.
A home that is beyond adequate.
Enough means to be fed well, clothed and even be able to travel.
A church that feeds my soul and a church family that protects that.
The ability to play music.
Two cats to curl up with.
Comedic timing to make people laugh.
A green thumb to help things grow (sometimes).
Shall I go on?  This could be a very long list…

So I’m lucky.  I may not always have my health, but for the most part I’ve been able to function quite well lately.  Enough to get out and enjoy things.  Enough to start volunteering at church once a week and enough to start back at school.  I’m even starting to get more exercise in.

Lately I’ve had some strong thoughts and feelings about mortality.  Of course we’re all going to die, but my reality is that it may come much sooner for me.  As of now I’m incurable.  I have no idea how long I have, but no one does really.  The thing that I feel the luckiest about is that I have barely changed since I’ve been diagnosed.  Now, MJ may tell you another story, I don’t know.  But I feel mostly the same.  I didn’t have a big “I need to change A, B and C and do X, Y, and Z now!”  The one major thing I did after being diagnosed was released baggage.  I let go of some of the feelings I was harboring toward some situations and people.  And it’s been great.  Very healing.  Other than that though, I can say that I’ve been living my life the same and that makes me so happy.  And lucky!  It means I’ve been living my life how I’ve wanted.  And that’s a great feeling.  It’s still very scary to have to deal with this monster of mortality, but it puts me at peace knowing I’m in the right place.
If I go tomorrow, I’m happy with what I’ve gotten to do and see in my life.  I’ve had a great life.  By no means am I done though. Don’t get me wrong, there’s plenty I want to see and do yet!  But it’s nice to be in a place of no regrets.

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Shrinkage and Shakes

New scan results are excellent!!
Tumors are still shrinking.  The best news we could’ve gotten.

I got to see the actual scans from May vs. last Friday and they’re remarkably different.  Just the size of my liver alone has dramatically decreased.  The spots that were all over the May scan have decreased to the point that I think they could actually be counted.

My oncologist and I have never had any discussions about prognosis.  I’ve never wanted it.  But based on his reaction to how well I’ve been responding to treatment, I get the feeling I didn’t have a very good outlook back in May.  So glad things look so much better now.

But with that good news came a disappointing one.  He had talked about going on maintenance chemo if these scans were good.  Going off the “big” chemo.  I was very much looking forward to less side effects. But because everything is going so well, he said we could keep going if I could stand it and try to knock it out more.  And because I’m in this for the fight, I decided to keep going with the big stuff.  That decision came with a few chemo burning tears, but I know it was the right thing to do.

I went ahead with big chemo on tuesday and was wiped right out.  I slept more than the cats.  By Wednesday afternoon I had the chills, was shaky and achy and just didn’t feel very well.  This wasn’t like other chemo sessions.
Thursday was the same and when the home health nurse came to remove my pump she said I didn’t look very well.  Asked a bunch of questions and recommended I call my oncologist.  He wasn’t in but the nurse said she would keep tabs on me.
By Friday I finally figured out what was going on…  Morphine.

In the beginning of all of this I was in a lot of pain and was put on extended release Morphine tablets.  I haven’t been in pain for some time and wanted to get off of them.  My oncologist recommended taking 1 less a day to start weening down.  Well, apparently I’m more dependent then he thought.

I started reading about it and luckily my dosages weren’t too high to have some of the other withdrawal effects.  Horrible stuff.
Called the oncologist back and he’s putting me in touch with the pain med team to get me off safely and hopefully without feeling like a sleepy, shaky turd.

I know I’ve said it all already, but I have to thank every one of you for all of the prayers, good thoughts, e-mails, texts, letters, cards, phone calls, hats, rides, company at chemo and everything else you all have done for me.  I truly couldn’t of done this without every one of you in this with me.  It all means the world to me.  Thank you.

Identity

Today in my stage IV cancer group we talked about “Identity”.
That’s been coming up a lot for me lately.  Cancer has kinda been my full time job since I’ve been diagnosed.  In some ways that’s been good.  I needed that time to process and heal.  In other ways it started to drive me batty.  Like cancer was consuming every part of my day.  That I AM cancer.  And I’m not.  By any means.

It’s a tough spot to be in sometimes.  I will admit that cancer has “come in handy” on certain occasions where I didn’t really want to participate but didn’t want to hurt anyone’s feelings.  Yes, I’ve played my cancer card.

I figure if I have to be a carrying member, why not use it?
It’s a bit of a double edge though.  I don’t want to be treated differently, yet, sometimes the card does come in handy.
I’ve started to let my hair grow back in.  Not only because it’s time, but because I’m getting a little tired of the looks.  Of people treating me differently.  Of being treated like a sick person.  But then there are times when I really am sick and need to be treated as such.  It’s a hard line to follow sometimes.  And very confusing to my identity.  Which role do I really want to play?
Of course I want to be well and treated as such.  I want people to think I’m strong.  I want to BE strong.  So do I rip up the card?  Do I stick it behind the library card in the wallet?  What exactly is the right thing to do?

I’ve been trying more and more lately to “put cancer away”.  To live my life as I would have had I never been diagnosed.  MJ and I have started planning a big trip for next summer.  I’m going to start volunteering at our church one day a week.  I started back at school.  I’m going to sign up for more 5k and 10k runs.  I’d like to make it to a 1/2 marathon by next year.  I’ll still go to my cancer support groups and I’ll still have chemo to deal with, but I want to make it just a part time job now.  Get back to really living.  Living because I love it not because I’m scared.  And I feel like the fair thing to do to keep in line with everything is to “get rid of my cancer card” too.  Play by normal life rules.

What would you do?
And I’m curious…  has my identity changed in your eyes?  Am I different now?

Getting to me

I can honestly say that I really hope the scan on Friday shows more shrinkage.  Not just because that would be awesome, but to maybe have the chance to be off the Oxaliplatin.  The BIG chemo.

My side effects have really been minimal and I really can’t complain, but lately I’m just so tired.  Just want to sleep all the time.   Until those certain nights around midnight, of course, where I’m completely wired.  And then I’ll want to sleep until noon.
I have had a bit of nausea as well and I’m really ready to have a normal appetite again.  It’s been all over the place.

So prayers, thoughts, good mojo, whatever you want to throw this way for good results on Friday?  I’ll take ’em all!  😀