OK so this is going to be a bit of a departure from my typical “I’ve got it all together” demeanor that I show to the world.  I’m going to pull down the mask just a smidge so those of you without cancer get a little taste of just how wacked out this disease makes you.  And everyone around you.  Sure feels like I live in Crazy Town the majority of the time!

I had labs drawn last week and got the results yesterday.  Lab results affect us tremendously.  Some folks just don’t understand how numbers on a piece of paper can make or break our entire week.  Personally, I hate that part!  I hate how these little numbers can totally wreck my day … a perfectly beautiful, normal day.  I felt fine both physically and mentally.  I had sensed disease was on the move again, but this particular test represented my last ditch effort with cannabis oil for a cancer cure.  As you know, I have a plan in place that is beginning Saturday as we leave for Georgia.  But I know … from my reading and from others’ experiences, cannabis can take down some cancer.  Just not mine.  But then again, we already know that even chemotherapy is considered powerless in the face of peritoneal carcinomatosis.

So my onc’s nurse called to give me the results yesterday and two of my cancer markers rose again, for the third month in a row.  Now they’re not rising a whole lot, but up is not the correct direction. Doctors typically don’t make diagnoses based on these labs alone; there are usually scans to complete the picture.  But my peritoneal mets don’t show up on scans.  The liver does and the bones do, but not the abdomen.  But it’s there … oh, it’s always there lurking, hiding, darting into a crook of intestine when the xrays are on.  That was the biggest scare for me when I was initially diagnosed with these mets.  How the hell were we going to keep track of them if we can’t see them?  They can’t exactly put a zipper in my belly to peek every so often, though I sure wish they could.  So it’s the markers alone for me.  Just one more anomaly.

One might say, so what?  You knew they were going to go up and you’re going to a clinic so what’s the problem?  That’s the crazy part!  Nothing really changed in my day at all except those lab results.  And here’s the tricky part about being responsible for your own healthcare.  When you succeed, the joy is sublime.  When you fail, ohhhhhh is it ever a failure!  And then what in the hell do you do next? Just how many alternatives are left that could work or that you could actually do?  So here’s what went on, over and over, in my head yesterday between Sane Me (SM) and Crazy Me (CM):

SM – The labs went up again.  Crap.  Well, so much for the oil … time to back down off that.
CM – Dammit, dammit, dammit … this isn’t supposed to happen!!!  I’m supposed to be healing!  Why does it work for everyone else and not for me?
SM – Just cool your jets.  you’re leaving Saturday to knock this out for good.
CM – But how do I really know that’s what’s going to happen?  Crap, we’ve been doing this for five years now and this is the last thing I’ve got.  This will take our finances down to zippo, and what if I still come back here and die anyway?
SM – That’s a possibility.  We know there are no guarantees … not even with standard chemo.  And until five minutes ago, you were so excited and felt so good about this place.  Look inside.   You know the answer.
CM – I know, I know, but I felt good about Karen Korona, too, and all that did was get me almost dead and $24k poorer.  I just can’t bear to do that to my family again!  How can I spend that much money again in good conscience?

So you see, this disease never lets you go.  I was having a perfectly good day, so very excited to be leaving on Saturday, and hopeful about what I’m about to do.  But now, I’m all freaked out about spending that money again, dying anyway, and leaving my daughter inheritance-less and my husband destitute from trying to keep me alive.  Healthy people have no idea how much it costs to keep a cancer person alive.  And especially if one is choosing the alternative, or even complementary, path.  That stuff isn’t covered by anyone’s insurance, so it’s all out of pocket.  Cancer doesn’t just take down the patient.  It takes down the entire family.  For generations sometimes.

Just how far should one go to stay here a little while longer?  That’s the universal question, isn’t it?  Do I throw everything I possibly can at it in order to glean another year?  I think I could last another year.  But my husband is retired, as am I, and when I’m gone, so will be my military retirement, VA disability, and SS disability pay.  And I’ve already blown through what we had set aside for our daughter.  How much more of that can be justified?  Afterall, I do have standard chemo, right here, for which I wouldn’t have to shell out any money.  But how sick would it make me, and how long would it really extend my life? In Georgia, not only will they be gently killing cancer, they will be stimulating my immune system to do what it was created to do.  And I know that’s something no one else has to offer.  But at what price?  Do you see?  It gets like a dog chasing its tail.

The next time you think Melissa has her stuff tightly wired … it might be more accurate to say it’s tightly wound.  And can come uncoiled in the blink of an eye … or one lousy number.

Advertisements
Comments
  1. Meg Patterson says:

    Oh Melissa, I’m so sorry about your markers. I TOTALLY know what it does to me, and can see it’s much the same for you. And the question of how much more treatment can be justified always nags. How much more money can be raised, spent…. and should it. Or is it more humane (to everyone) to just let go? I lie awake nights worrying about these questions.

    I think about dumb things like: For 3 or 4 Vitamin C drips, I could get a dog fence, which we desperately need… or new tires for the car. And how many great vacations could we have had with all the money spent on dumb (and sometimes painful) cancer treatments? What’s working and what isn’t? It’s so hard to know.

    Well, I hope you will go through with the Georgia thing, since you felt so good about it before. Who knows, maybe it will lead to some wonderful friendships. All my treatments have!

    Take care,
    Meg

  2. gary ryan says:

    Hi Melissa, this goes to show us how powerfull our minds really are.You concentrate on this trip, and be confident in the choices that God has lead you to take. Get that feeling back, the same one you had before you received these results.You are a blessing to many people.Im looking forward to your blogs.
    Gary xxoo

  3. Edwina says:

    Dear melissa, Don’t read too much into tumor markers. They’ve stopped being accurate for me. You still have a lot going for you. Go with your heart. Your daughter will appreciate how hard you fought to be around for her. Time is precious and priceless. I’m cheering you on. God speed.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s