Friday, June 10, 2011

the appointment that isn't happening

Here are the options as I saw them.  1. Get up at 2 am. Sit in the truck for 4 hours while Peter worked his shift in order to make the 1 hour drive to Gainesville, to get to the hematologist, to have the inept tech bruise the crud out of my arm again and draw half a dozen vials of blood.  Wait for an hour for the same tech to finish running the tests and get the results to the doctor.  Wait another half an hour for the doctor to finally show up and tell me the results.  Drive another hour and a half home.  Grumpy, exhausted and money-we-don't-have poorer. -or- 2. Go to Lake City, duck into my Gyn's office for 15 minutes, have a finger-stick and a 1 minute wait time for the SAME results I'd get with option 1.

I went with option 2.  Sensible.  Fast. About $100 cheaper.  And they are the same results.  At least, the important ones are the same.

Hemoglobin.  The bane of my existence.  That pesky little iron-y bit that carries lovely oxygen all around the body.  That thing I spent the last 19 years dumping into waste receptacles, along with such a vast quantity of feminine hygiene products that I'm most likely responsible for an entire small landfill.  Those numbers that are supposed to read at bare minimum 13, but better if they're around 17 or so.  That number which rarely went over 6, and made it to 8 only after a 3 pint transfusion.  That number which dipped to a 4 and had medical professionals asking me why I wasn't in a coma.

How is it that one little number can hang over my head in guillotine fashion?  Is it really surprising that even though I had the recommended 2500mg IV of iron, my magic number continued to resist rising?  2 weeks after the IV, I had my total hysterectomy and bilateral salpingo-oophorectomy, essentially - the removal of all my girly bits and the stitching-up of the spot where my cervix once was.  At that point, my magic number had risen to a hefty 15.  Post-surgery bloodwork revealed an expected drop to a modest 13.5.  The general consensus was that the number would rise again since the blood cells had not all replenished since the IV (that process, according to the hematologist, requires 28 days) and everything would be just fine.

But what if it's not?  I, the ever curious, (or as some would say "paranoid") wanted to know.

The response?  Well, if the jolt of iron did not help my marrow turn back into happy little healthy hemoglobin factories, we'd have to do something to help it along. 

Like what?

Well, the option suggested, in a very lighthearted and straightforward fashion, was to tackle the problem by "rebooting" the system. 

And how, pray tell, is this done?  Having a background of computer tech-support, all I could envision was a system hard reset (killing power while the system is on and running), followed by a boot to CD, then DEBUG, fDisk, format, reinstall. 

Oddly enough, that's a pretty close parallel.

First, they'd drill a hole in my leg, slide in a hefty needle, pull out some marrow for typing with potential donors.  Locate a donor (most likely from a family member... and oddly enough, I have at least one lining up to hop on the table if need be.  Watch me shudder at the thought!)  Once the donor was found, we'd shut my "defective" system down with a type of chemotherapy - destroying my immune system in the process - apparently because the blood police wouldn't like what was coming next, so had to be taken out of the picture early on.  Then, once again, they'd drill a hole in my leg, and in the leg of my donor, slide in a hefty needle, pull out some marrow and at some point inject it into me.  The idea being the healthy donor marrow would take over and start churning out healthy red blood cells with the proper uptake of iron/hemoglobin and all would be right with the world.

Uhm. No, thank you.  I had already decided to opt out of chemotherapy and radiation treatments should the cancer have been in an advanced stage that "required" such debilitating therapeutic methods.  No way in heck am I going to go through that because of a number.

Why is this important now?  Well, I went for option 2, as outlined above.  And I have my new number.  I'm now 5 weeks past surgery, 7 weeks past infusion... that number should be all sorts of good if everything is going well.  13.5 was the number to beat... and my new magic number is... 13.  Just 13.  Down .5, which doesn't seem like much in the great scheme of things - I mean, I'm still in the "good" range.  But it's falling.  Falling at about half a point a month.  We calculated everything out early on in this whole process.  We figure that at a 4 I was able to function, but not well - chronically out of breath with the least exertion, ongoing chest pains, bronchial spasms.  On the road to seriously unwell.  So, by our estimation, a "2" would be lethal.

Now comes the nifty math bit.  And even though I'm an English major, I can still figure this one out.  I'm at a 13 now, during the first week of June.  I'm dropping roughly half a point each month.  That's 22 months until I'm at the lethal stage, should this trend continue... and we have no reason to believe that it will do anything other than continue.  As it stands, I'm ingesting enough iron, in multiple forms, to kill a normal human being several times over.  I have slow-release, 150mg, that I take twice a day.  35mg regular iron pills three times a day.  45mg of a different type of iron pill twice a day.  A massive vitamin C boost, to help the iron uptake, every day.  I eat primarily iron-rich foods - and since it became apparent that my body refuses to utilize vegetable-based iron sources, that means I eat meat, and lots of it.  I have lists of the meat products with the highest iron levels and I have eaten so much calamari (right at the top of the list) that I'm pretty sure I'm growing tentacles and a carapace.  Does my nose look beak-ish to you?

I'm doing everything I can reasonably do to reverse the situation.  I don't view mucking about with bone marrow to be in the "reasonable" category.  I've heard all the arguments.  From "you're too young for this - you've so much life ahead of you" to "you're being selfish not to have whatever treatment is available."  All I can say is, apparently I'm not too young, because this is reality and all I can do is make the most of the days I have remaining.  If it makes me selfish to not want to put myself or others through a painful procedure that, in the end (and in all likelihood), may not even work... then I'm selfish, and proud of my selfishness.

I like to think that in my 40 years in this incarnation of flesh and spirit, I've done some pretty cool things.  I brought a child into the world, and he is an incredible young man.  I've been a cleaning lady, a guest-services provider, a soldier, a business woman, a printer, a tech-support rep., a filler-operator, a lab technician, a student and a teacher.  I've been a wife, two times over, and I'm pretty sure I'm doing a better job of it this time around.  I've been happy a lot, and sad sometimes.  I've been a lover and I've been loved.  I've been angry with reason, and angry for no reason, and I've discovered that both are perfectly valid.  I've laughed in inappropriate situations, told jokes at a funeral, had my words sound right in my head and perverse when I've said them (or typed them, sometimes).  I've tried very hard to be the kind of friend I'd like to have - mostly cheerful, encouraging, kind, understanding, open, generous and honest.  I'd be less than honest with myself if I didn't admit that I wasn't always the best of friends.  I've let some people down who maybe didn't deserve it, I've run away when I should have stood my ground, I've harbored pain I should have let go long before now - but somehow couldn't seem to manage.  There are people I should apologize to who I will never speak with again, and that makes me sad.  There are people I should have told "I love you." who I will never see again. 

This wasn't meant to be mushy and full of sentiment, or perhaps it was, or perhaps that is what I needed.

I can say that the only regrets I have are not due to things I've done - I'm a firm believer in "that which does not kill us, makes us stronger" - no, my regrets are for the things I failed to do.  And there aren't very many of them.  And I find that now I can let go of even those.

So, I have 22 months, or a bit longer.  2 more years.  Or perhaps more, if my magic number decides to stabilize around the 6-8 range where it hung out for several years before the dramatic crash that started this wild ride.  But whether I have 22 months, 2 months, 2 years or 20... I'm pretty much ok with the person I am, and I'll take what time is mine and live it as best I can.

By the way, if you didn't know, I love you.