Monday, June 20, 2011

Learning to listen to myself

I'll be the first to admit that I am stubborn.  I will ignore all the signals my body sends until it is far too late.  For nearly two years while at FSU, I told myself that I was only getting out of breath because I was overweight, and if I would just stick with it, the walking would get easier and I'd be stronger for just pushing through. 
For someone who prides herself in always being honest, oh, how I lie to myself.

It's not quite the same these days.  When I don't listen to my body, it retaliates by sending a stronger signal - along the lines of excruciating pain.  Why, then, would I continue to push myself beyond my limits?  Because I'm stubborn.  I tell myself that if I don't -try- to do things, I'll never know if I can or not.  The problem with this is that when I realize I cannot, I don't stop.  Instead, I get angry with myself for being weak and force myself to continue... until the pain hits.

Pain.  In waves of super-heated electro-shock cascading cataclysms that roll throughout my body.  It would be alright if it were isolated.  If my abdomen was the only thing that hurt, then I would be able to isolate that particular pain and deal with it.  My body knows this.  And being the rebellious body that it is, it gives me not only the gut-wrenching cramps and shooting/stabbing pains, but it pulls other muscle groups into the fun and games as well.  Calves cramp up, shoulders lock, jaw seizes... and then, just when I think it cannot get any worse, I'm hit with a headache that starts at the base of my skull and radiates up and out.  My eyes burn and go bloodshot, my sinuses, not to be outdone, swell and congest.

What was so important that I let it get this bad?  Laundry.  I sorted exactly 3 loads of laundry.  Not washed three loads.  Sorted them.  I bent over, scooped the clothes into a basket, then dispersed them into whites-and-lights, reds and darks.  It wasn't even all the laundry.  Honestly, it didn't make much of a dent at all.  But the clothes were in my way.  And I let my frustration push me into a series of bend-and-stretch motions that I should have known better than to attempt.  And when it started to hurt, I got angry.  And using that anger as fuel, I finished sorting those three loads. 

And then I curled up on the bed and tried not to whimper.  No, I still wouldn't allow myself to acknowledge the weakness within.  Instead... I folded laundry that had already been washed.  Folded it.  Put it on hangers.  Got up and stretched to hang those clothes up where they belong. 

Did I listen to myself at that point?  No.  Of course not. 

Instead, we went over to my mother-in-law's house where I ironed a garment that I want to duplicate.  Then got down on the floor and laid out kraft paper... and made the pattern from the garment.  Let me reiterate.  I got down on the floor.  On the floor.  And crawled around.  And reached, and stretched, and pulled.

And then I sat down for a bit. 

But then we came home.  And I folded some more laundry and put it away.  Actually, one of the loads I'd sorted earlier, that Peter had washed and dried.

And then I let myself lie down.

Peter went to sleep fairly quickly.  He has an early schedule lately because his new job starts at 4am.  He gets up around 2 and leaves the house shortly after 3.  So we have been going to bed around 7 to 7:30pm. 

Peter slept.  I ... made lists.  Well, I did a couple of pen-and-paper puzzles first.  Then I made lists.

I made a list of the projects that we need to finish around the house and property.

I made a list of the things we need to buy in order to finish those projects.

I made a wish-list of groceries.  I know that sounds kind of odd.  It started off as a list of things I'd like to get back in stock in my pantry (which is pretty barren these days) once everything settles down financially.  It ended up being a list of "what would I buy if I could just go into the grocery store and not worry about how much it cost?"

And at the point when I put "milk" on the grocery wish-list, I realized that we are in no financial position to do the majority of the projects that need doing.

Unfortunately, some of those projects are important and relatively urgent.  My truck is sick.  Sick enough that she's parked until we can afford the new rack-and-pinion and power steering pump that she needs.  The living room needs to be cleared out so we can do necessary repairs and seal the floor so the puppies can have a decent amount of space again.  The living room was nearly done - until I had Peter move some boxes off a long shelf in our bedroom ... out to the living room.  And now those boxes need to be gone through and mostly recycled or discarded.  Why did I have the boxes moved?  Because our momma dog, Morgana LeFay, is going into heat and we'd rather not have another litter of puppies.  She (and her beau, Stitch) are getting a little old for that sort of thing.  But that meant we needed to re-hang our bedroom door.  Now that's a long story.  Suffice it to say, it sounded like a good idea at the time.  But to re-hang the door, we needed to take down the shelf supports that were blocking the doorway.  And thus, the shelf was destabilized and needed to be cleared off.  And this is how one simple project turns into thirty.

And this is what I think about when I'm lying there, listening to Peter snore, trying to ignore the fact that pain continues to radiate throughout my body.

And suddenly it's 2 am.  Time for Peter to get up.  And what the heck, I may as well stay up since it doesn't seem like I'll be able to sleep anytime soon anyway.  And that's how it gets to be 8 am, with my back complaining about sitting up at the computer for so long, and the washing machine beeping at me to switch over loads, and my abdomen protesting whenever I shift - much less get up.  And the puppies are waking up and wanting walks.  And after I let them out... and get them back in... and double-count because some of them are sneaky... I think I'm going to start listening to myself. 

I think, after the puppies are settled, I'm going to ignore the washer (it's a stacked set, so I have to squat to remove the load ... then stretch up to put it into the dryer) and instead of tackling dishes or boxes... I'm going to make myself lie down and close my eyes.  I'm going to put away my lists.  I'm going to try... try... try... to not think -quite- so much, and let my brain relax.  And maybe, just maybe, I'll take a nap.  Hopefully one that doesn't last all day.

One day I will learn to listen to myself.  I'll learn to stop when it just starts to hurt.  I'll forgive myself for being ill.  I'll understand that it isn't weakness to slow down or even stop.  One day.

Tuesday, June 14, 2011

The light is green, it's time to... stop!

In interest of maintaining an accurate record of all I'm going through, the following post contains sexually explicit descriptions.  If you don't want to know - skip this one.

I had an appointment with my gynecologist/oncologist today.  It started off with a happy scale - all told, I've lost 20 pounds during this adventure.  My blood pressure was a bit elevated, but then I'd just walked the equivalent of 2 blocks in the balmy 102 degree weather that Florida is offering us these days.  Even with the exertion, it was only 140/85.  More than acceptable in my book.  Considering a year ago those numbers stayed around 200/110... yeah, I'll take it.

The PA came in.  I'm not particularly fond of her - she tends to stress me out more than easing my mind, but I'd mentally prepared for this and managed to make myself relax.  She looked at the scars - which are rather extensive and range from dark brown to pink mounds of puckered flesh - and pronounced them perfect.  I told her I'd had 4 stitches work their way out thus far and pointed out the bumps where several more are approaching the surface.  She merely made a comment about how my body seems to reject stitches, and that it's okay.  Then we came to the internal exam. 

The kind and friendly nurse came in to assist.  I started cracking jokes - as I do when I am nervous.  I made Peter come hold my hand, and worked very hard on my meditative state and my breathing to make myself relax.  External look-see went fine.  The dreaded speculum came into play, along with the prerequisite half-a-tube of lube.  Again, everything went fine.  Then she did a digital exam.  Using another giant glob of (freezing cold) lube. 

That woman has fingers that seemed to reach up to my sternum.  Ok, halfway to my sternum.  At any rate, she pressed all along the healed suture line and pronounced me "good to go."  As she put it, ever so subtly, "you can swim and have sex."

I sat up and fired off the burning question.  "Since my... depth... has changed, will I still be able to handle his (insert impressive measurement here)?"

She assured me that my depth had not changed at all (which is absolute BS -- he regularly bumped my cervix before the procedure, and they removed said cervix and sewed together the top end of my vagina.  Basic math tells me that at least some depth had to have been lost during this process) and everything would be just fine.  Just take it "low and slow." And she noted that some women have some "spotting" after "vigorous" intercourse. 

Let me digress for a moment.  At the moment I stated the above measurement, the PA had absolutely no visible facial reaction... but the nurse (the rather attractive nurse) had an involuntary widening of her eyes and darted a glance toward my husband - quickly shifting her glance back to me and blushing a little when she noticed that I had noticed.  I was good.  I didn't giggle.

So, the green light has been given.  Now what do we do?

I'm hesitant.  Hmm, that's not quite the word.  On edge? No. That's not it, either.  How about flipping Terrified!  Yes, that's fairly accurate.  All I can envision is one deep push and one horrific tearing sensation.  But we have talked about this.  I know I'll be in control and he will be careful.  But I'm still overly tense.

In the interest of keeping this an accurate account, and since I've already talked about all the naughty bits and their myriad of dysfunctions in detail, I'm going to continue.

Yes, we tested the waters.  He is very good at making me relax... and we ended up laughing quite a bit before the act.  It's perfectly rational to be scared.  When the body reacts, there is a reason.  Some things were uncomfortable.  I'm glad that he listens and is patient.  Digital stimulation is alright, but there is some sensitivity both at depth and near the surface.  The latter may be residual soreness from the earlier visit by the speculum. 

It was easier to assume a female-dominant position at first.  This allowed me to be completely in control of depth and speed.  I was happy to discover that it really wasn't a problem.  We shifted to a male-dominant position and encountered some limited discomfort.  For now, we will have to keep things a little slower than usual.  At least I've not lost muscle tone, and I am more comfortable now that I know nothing is going to tear apart.

We were told to expect to need lube.  In fact, we were assured that we would need "plenty of lube" for comfort.  Again, this was BS.  We had not required lube in the past, and the same is true of the present.  This may be different for each woman - just as the "normal" amount of moistness varies from woman to woman.

Another advantage - for the first time in 19 years, I'm not bleeding!  This means no hesitation (on my part) when it comes to receiving oral stimulation.  Even on my lightest of days - at times when there was no discernible flow - I would be tense and overly concerned with the potential messiness.  I cannot begin to express how amazing it is to not have those worries.

Thus, the fears and concerns are valid, and it is necessary to be gentle and have a patient and responsive partner, but in the end - everything works the way it is supposed to work.  I was far too analytical to allow myself to relax enough to orgasm, so I am a little unsure about how everything will feel when that finally happens.  With luck, and patience, I'll find out soon!

It's now several hours post-coitus, and I am definitely sore.  We did nothing "energetically" - but it feels like I have some swelling internally.  The pain is more than "twinges" - and I'm having trouble relaxing for sleep.  I'm going to take one of the milder pain pills, just to get past the worst of it.  I think if I'd taken an ibuprofen or maybe even tylenol beforehand, I'd be alright now.

Considering I'll be 6 weeks post-op this coming Thursday, I'm impressed at the level of healing.

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.

Tuesday, June 7, 2011

I've got a feeling...

June 7, 2011 at 11:03pm
And I'm not listening to that Blackeyed Peas song.

No, I'm sitting here at my desk, quietly typing away.  Sitting nice and still because I've been having those annoying lower-back pains today.  The ones that make me stay in the stooped-over position every time I stand up.  And the leg is all numb (as usual) all the way to the ankle today (somewhat unusual)... so the point is, I'm sitting gingerly (no, not like a red-head... and I really need to hush this internal dialogue when I close the novel file and open the note file, oh well)... so, I'm sitting delicately on my cushy chair, typing away... when all of a sudden I feel a warmth.  Warmth that spreads rapidly throughout my body.  It would be almost pleasant if it weren't for the fact that the warmth soon turns into a raging heat, accompanied by instant perspiration and a sensation that, were I in possession of a fan and a chaise, I would surely swoon.

What the heck is this?  Some new instant-fever?  Another bizarre symptom of my already freakish autoimmune disorders? Payback for that sandwich and Pepsi I consumed earlier?  Oh.  Wait.  I know what this is.

And so I relax in the chair and wait for my first-ever hot flash to pass. It takes roughly 7 minutes before my body once more registers that yes, the air conditioning IS on and working.  It takes about 2 more minutes before the flush fades from my skin and the heat recedes.

Welcome to Menopause.

I knew this was coming.  Of course it was coming.  I no longer have the bits that have held it at bay for 40 years.  It is no longer on its way... it is here.  And it's tap dancing to old movie soundtracks.

I've already discussed this with my doctor.  Of course the discussion consisted of something roughly like this:
Doc: We'll be removing both of your ovaries, fallopian tubes, uterus and cervix.
Me: *brief digression, because the addition of cervix was news to me*
Doc: You'll, of course, go into menopause shortly after surgery.
Me: Ok. How soon after?
Doc: As soon as the hormone levels drop.  It could take a couple of weeks or it could be faster.
Me: Oh, ok then.  Well, none of the women in my family have had any problems going through menopause, so I'd rather not go on any hormone replacement therapy if we can help it.
Doc: Sure.  So long as you're comfortable, I'm fine with that.
Me: Alright, guess that's it then.

So, that was the discussion regarding menopause.  Which, in retrospect, did not prepare me AT ALL for the overwhelming shock-and-awe campaign my body just unleashed.

Excuse me, I need to drop an ice cube down my bra.

Ok, much better now.

What is one to do when something like this occurs?  Why, answers are right there at my fingertips!  It's time to Google!

Ok, refine search, because whoa is Rule 34 active tonight or what?

And I find an awesome collection of sites that list symptoms and what to expect and how you know it's really menopause.

Hmm.  Come to find out, most of these sources agree on one thing.  Early menopause caused by surgical removal of the ovaries usually has "more intense" symptoms than menopause that occurs naturally.  Well. Isn't that good to know.

What do I have to look forward to?  Other than the aforementioned Hot Flashes, there is an extensive list.  And by "extensive" I mean that there are roughly 34 acknowledged symptoms of menopause.  Let's explore.

1. Hot Flashes/Flushes or Cold Flashes
     Interesting.  I had no idea these came in "cold"... may I have one of those, please?  It's already blessedly hot outside.  Some cold would be refreshing.

2. Night Sweats
     Kind of like the hot flashes, only you get drenched in the process.  Nice.  Guess I'll be using those jersey-material sheets more often.

3. Irregular Periods / Menstrual Irregularities
     Uhm. No, don't think so.  I do believe that I get a pass on this one.  After all, I suffered with this one for 19 freaking years.

4. Loss of Libido
     Well.  It's nice to know that I have something to blame that one on, should it occur. Right now I'm in a no-fly zone anyway, waiting for the okay from the doc next week.  Honestly, any loss of libido will be because I have an irrational fear of the new plumbing not holding together properly.

5. Vaginal Dryness
     That's why K-Y is in business.

6. Mood Swings / Sudden Tears
     And my current meds for that no longer work. Looks like it's time to add meditation back into my daily routine.

7. Fatigue
     This is different, how?

8. Hair Loss or Thinning: head, pubic or whole body; increased facial hair
     Again, this is different, how?  New reason for the same old problem.

9. Menopause sleep disorders (tossing, turning, insomnia)
     More of the same.  But wait, there's more!  Insomnia levels can double over those prior to menopause.  Double.  And anyone who has roomed with me for any length of time knows about my chronic insomnia.  Wheee! No more sleep at all!

10. Difficulty Concentrating / Disorientation / Mental Confusion
     So I won't be able to tell if it's the anemia or the menopause.  Lovely.

11. Disturbing Memory Lapses
     What was I doing again?

12. Dizziness / light headedness / loss of balance
     I guess I'm going to continue perfecting my art of falling.  The stairs will be so happy.

13. Weight gain
     Dangit, do I have to take up smoking or something? Why can't just ONE of my myriad of conditions include weight loss?

14. Incontinence, especially when sneezing or laughing
     How often do I laugh?  All the freaking time!  I thought I was done with feminine hygiene products!

15. Sudden bouts of bloat
     This is starting to sound annoyingly like PMS.

16. Increase in Allergies
     Say what? Lose the period, gain the sneezing... and, wait for it... sneezing will make you pee!

17. Changes in fingernails: softer, cracking or breaking easier
     Another similarity with the anemia symptoms.  Interesting.

18. Changes in body odor
     Sweat by any other name is still sweat.  Yay for modern plumbing and anti-bacterial soap.

19. Bouts of rapid heartbeat
     This one isn't good.  Considering I'm already tachy... at ~ 101 bpm, a bout of rapid heartbeat could be lethal.

20. Depression
     Probably because of all the peeing.

21. Anxiety, feeling ill at ease
     Right up there with mood swings and depression.  Really, is it necessary to separate all three of these into different categories.  What is the point?

22. Irritability
     Uhm.  Judging by the comments on the last point, I think I have a bit of irritability already.

23. Panic disorder, feelings of dread or impending doom
     Been fighting this one for years.  At least I know what to expect.

24. Breast pain
     Really? Breast pain.  Even the girls are going to be unhappy.  That is just sucky.

25. Headaches
     Often called "menopause migraines."  Awww, look, they gave it a cute little name.  That's to hide the fact that these buggers are excruciating.

26. Aching, sore joints, tender muscles
     Which go right along with my RA, so nothing new there.

27. Burning tongue, burning roof of mouth, bad taste in mouth, change in breath odor
     What the? I don't even know where to start with this one.  I think I need to pee.

28. Electric shock sensation under the skin or in the head
     The description indicates this can be like a "rubber band snapping in the layer of tissue between the skin and muscle."  Who volunteered to try that one out?  *snap* "Oh yeah, that's EXACTLY the sensation I was having.  Now, could you sew me back up, please?"

29. Digestive problems, gastrointestinal distress, indigestion, flatulence, gas pain, nausea
     So many things make sense now.

30. Gum problems, increased bleeding
     I guess the body wants to bleed from somewhere.

31. Increased muscle tension
     Isn't that called "stress"?  I'd be tense if I were peeing all the time.

32. Itchy, crawly skin
     We always called this a case of the nerves.  Been dealing with it for years.

33. Tingling extremities
     As opposed to tingling all over?  And does this include the now-chronic deadened-tingling sensation I have all down my left thigh?  Or is that still nerve damage from the surgery?  It's all so ... overlapping.

34.  Osteoporosis (after several years)
     So, menopause makes the bones degenerate.  Nice.

If I'm understanding all of this, menopause could potentially make me a hot and cold, dry, sexless, bald, exhausted, anxious, depressed, tense, tingly, itchy, aching, puking, electro-shocked mouth bleeder with bad bones and sore breasts.

Geez, if guys think PMS is bad, wait until they get a load of menopause.

I dunno.  I still think I want to throw a "menopause party"... I'll just have to keep dropping ice cubes down my blouse to remain sociable.

Congratulations if you read all 34 points.  Now you may pee.

clothes may make the man, but what makes the woman?

June 3, 2011 at 12:30am
Logically I know that gender is a construct and irrelevant.  Logically I know that, were it to be even moderately accurate, "gender" would have many more than two options. Yet there exists a hollow pit of despair that refuses to understand logic.

I have friends who are dear to me who defy traditional gender roles and hetero-normative sexualities.  I know women who would prefer to be men, men who would prefer to be women, women who used to be men, men who used to be women, men who dress as women but prefer to be men, drag queens (and kings), an entire spectrum of LGBTQ identifiers, along with pansexuals and a half-dozen other (mostly) meaningless words.  Why meaningless? Because we are all people.  Just people. People trying to make sense of our lot in life and figure out who we are and why we feel the way we do.  People who accept the bits the genetic jackpot dealt, people who get those bits readjusted to become other bits, people who struggle every day to feel like they belong in their own skin.  Heck, it doesn't even have to relate to the naughty bits.  There's the 4'11" woman who just wants that last freaking inch.  The 7'2" guy who wishes he didn't have to duck to get through doorways.  The one who eats everything in sight, but can't get up to a healthy weight - who hates that their bones stick out and cringes from the stares.  The one who hardly eats and exercises until they drop, but can't beat the conditions that keep them morbidly obese.  The one who has to stay home, on heavily padded furniture and can never own a dog or cat because his bones are so brittle that if a pet jumped on his lap, his legs could snap.  I know these people.  I love these people.  And it is because I know them and love them, that I feel twinges of guilt even admitting that I have a problem.

My surgery removed all of my internal sexual organs.  Every female bit was taken, sliced, examined and discarded. That hollow feeling inside? That's where I once nurtured life.  Those divots to either side? Those housed all the potential lives that should have been doled out, one by one, month by month.  In the great scheme of things, I shouldn't have a sense of loss.  I should be happy.  Happy that the cancer was caught in early enough stages that it could be effectively removed.  Happy that I avoided the swipe of the scythe.  Happy that my life can go on.

Like I said earlier, logic has nothing to do with this.  And why shouldn't I feel loss? Why shouldn't I be saddened that I can no longer function as a female.  Even when I had the parts in place, they weren't working properly.  Not by a long shot. That is part of why I have trouble coming to grips with these emotions.  We had realized long ago that a child was simply not possible for us.  But now.  Now it isn't even possible through miraculous intervention.

And I sit in my wheelchair, with my loving husband pushing me through the aisles, and I see the baby bottles in their neat rows.  The car seats and high chairs.  The tiny shoes and patterned onesies. And I carefully wrap the hand-crocheted blanket and mail it to a baby that will never be mine.

And I make lists of all the things that define a woman.  Is it the breasts? No, because a mastectomy survivor is still a woman.  Is it the vagina? No, because damnit, a pre-operative transgendered woman is just as much a woman as one who was born with the bits.  Well, then, what is it?  What is that defining characteristic? That spark? That bit with the flashing arrow to tell us that this... this right here... is why I am a woman?  And I've come to a sobering conclusion.

There isn't one.

Nope.  Not a single one.  Sorry, gang.  It's not T&A or the ability to bake buns in the oven that marks a human organism as woman.  It's not a bit, inside or outside.  It's not the hair or the pelvis or the shape of the jaw or the ridge of the brow or even the absence of an adam's apple.

There's only one thing that makes me a woman.


the aftermath or it's all over but the healing

May 20, 2011 at 1:27am
There have been may times over the past two weeks when I wanted to sit down and write a note about the surgery, about my progress, about my mental stability or lack thereof, but all sorts of things prevented this simple task.  Things like being unable to sit at a computer or randomly falling asleep in the middle of a sentence or long stretches of whimpering as I lay on my back, struggling to breathe in the awkward position forced upon me by excruciating soreness in my abdomen.  But through it all, I wanted to write.  I wanted to put the next chapter down in print.  The chapter that starts with:

"I made it."

I beat those slim-to-none odds and even though the surgery that should have taken 45 minutes took a little over six hours... and even though I was strapped to the operating table and tilted at an angle with my head downward for all six of those hours... and even though my head apparently looked "like a pumpkin" when my family finally were allowed into the room... and even though the best estimate was 15% survival and 5% survival with no complications... I freaking made it.

Well, I made it somewhere in the 10% range.  There were complications.  Plenty of complications.  During the surgery - all the cuts were able to be made by the robots through seven little incisions - three on each side of my belly, one through the top of my belly button - but when the uterus weighs in at right around 3 lbs... another incision is required to get that sucker out of the abdomen. So I ended up with another slice on top of the 3 vertical scars already in place from my navel to my pelvis.  This one is lower, only about halfway to my navel from my pelvis, and I must say - it's uglier.  The others formed a nice, neat line.  This one is a grotesque wad of puckered scarification.  But it is healing.

In fact, I'm healing much faster than the doctors expected.  After all I went through on the operating table, no one expected me to be out of bed the first day, but I was.  In fact, I was out of bed and slowly making my way down the long hall outside my room.  3 laps that first day.  They were slow, painful laps, but they were mine.  And I relished every shuffling, waddling, penguinesque step.  Because being able to move proved that I was alive.

I had my doubts on that count.  Especially during the first night after surgery.  Mainly when I requested and was given the full dose of my pain medication.  Since I'd not had any reaction to the half-dose I'd been taking, no one expected me to have any troubles with the full dose.  That was our first mistake.  The full dose had a paralytic effect - I could not move my arms, my legs, my head.  The best I could do was suck in air and force it back out again.  Slowly and painfully.  Somehow I conquered the panic that threatened to overwhelm me at any moment, and I concentrated on breathing in and out.  Because if I didn't concentrate, I'd have stopped.  Nothing is as big a buzz-kill as being unable to breathe.  It took me half an hour before I could regain any peripheral movement, and by that point, I was exhausted from the struggle to survive and passed out into oblivion.  I woke up several hours later - once again in pain.  I called the nurse... told her I thought we should stick to the half-dose, and explained why.  By morning, I had been switched to a different pain management medication. Crisis averted.

Moving around triggered other issues.  I found that my hips and upper legs would go numb and pins-and-needles tingly, as though they were asleep.  I had pain that would shoot across my lower back causing me to freeze in place.  I had the worst urge to cough - but coughing opened up a whole new world of pain.  My belly was numb... on and off... and I had no feeling for several inches on either side of the central incision.

It's the little things that bring us through these dark times.  The little joys.  My surgery was on Thursday.  Friday night, for the first time in 18 years, I slept without a pad.  I haven't needed one since that night.  At least not for feminine hygiene reasons.  In fact, I had three packages of pads sitting at home.  What would I use those for now?  I need not have been concerned - there's always something.

My something came in the form of "copious amounts of drainage" - from a pinhole sized opening in the large incision, I would deliver a steady stream - not a trickle, not a drip, not a drizzle... no, a freaking STREAM of fluid.  As this was nothing new (we'd had similar drainage after my January surgery) we taped a maxi pad up against my belly and went on with life.

Let me back up a moment.  Remember that I mentioned no-one expected me to be up and around on Friday - the day after my slice-and-dice?  Well, that included the doctor.  She was somewhat shocked that I was sitting up in a chair when she arrived to look me over on Friday evening.  By Saturday morning I was doing so well that she took a cursory look and declared me fit to go home.  So I did.  6 hours of surgery on Thursday - and almost dying from a massive fever during recovery - and I was home by 1pm on Saturday.  So it's at home that we are dealing with this drainage issue.

It's inconvenient, yes.  But it isn't a "smelly discharge" - nor is it "oddly coloured" - and there are no accompanying redness, swelling, fever or chills.  We opted to deal with it on our own.  I waddled to the bathroom, sometimes as frequently as every 20 minutes, to change the pad collecting the liquid.  We waited for it to slow down.  It decided it had other plans.

My follow-up appointment was the Friday after leaving the hospital.  It was supposed to be a quick staple-removal and once-over and a short conference about the biopsies of the lymph nodes and uterus and staging of the cancer. It ended up being a little more chaotic.  I excused myself from the waiting room to go to the restroom.  I noted the drainage continued unabated, and therefore changed the pad and went back out to the waiting room.  Not feeling like sitting down, I paced around a little.  Finally, as time wore on, I decided to sit down on the small sofa beside Peter.  Mistake.

As I made the bending motion, my incision decided it was time to amp up the discharge.  I found myself, much to my embarrassment, standing in an ever-widening puddle of fluid.  I freaked out.  Peter did his best to help me maintain - but we had nothing in our little bag that would take care of this.  He finally went to the receptionist and requested a towel - she called the nurse - they whisked us back to a room... I was mortified and in a moderate state of panic.  That the "professionals" seemed to be ratcheting up their alert status as well only served to feed my own fears.

We were left alone so I could disrobe - Peter helped me get situated.  And we found out that my doctor wasn't even there - because it was supposed to be a quick check, her PA was there to look things over.  The PA examined me.  She has a disturbing habit of thinking aloud.  This time her thoughts ran along the lines of wanting to open me back up so she could see how things were healing inside.  I was adamantly against this proposition.  No way did I want her prying open my newly healed incision!  She triggered panic attack #2.  Wisely, she left the room to call my doctor - advising her of the situation and requesting that she come see for herself and decide on a course of action.  About 30 minutes later - I'm still draining like a pro, and my doctor arrives.  She is impressed with the level of healing, concerned about the level of drainage.  Her decision: to take a device that looks like a hollow knitting needle and use it to open up the pinhole I'd been draining from in order to facilitate the drainage.  She explained it like this: the adhesions (of scar tissue) that I have in my abdomen tend to hold the parts that need to touch to heal away from one another.  Because they open up these areas, fluid can collect in the gaps.  This fluid needs to come out so the parts can touch and heal up properly.

Still, I wasn't expecting the size of the device she proposed using.  By this point there were six of us in a room roughly 6'x8'.  It's crowded.  I'm anxious. And the doc is wielding a big plastic tube and proposing to stab it into my tender tummy.  Panic attack #3.

But eventually I relax.  And she slides the implement in (and I don't even feel it - at all - in part thanks to the overall numbness of my abdomen) and this releases the trapped fluid in an even faster stream.  The advantage of this?  I am directed to take at least one warm shower daily - preferably more... and to have belly massages to work the fluid out.

Wait - warm showers and belly rubs?  This is one thing I can agree with our chihuahuas on - belly rubs and warm showers are all sorts of awesome.

An appointment is made for the following week (for today, actually) - and we go home.  The nurse was so impressed by the use of the maxi pads that she is now going to advise all their patients who have drainage to use them - because they whisk all moisture away from the skin and you don't have to deal with the associated problems of skin in prolonged damp conditions.

I expected the drainage to slow down over the next few days.  In fact, I'd predicted that it would stop completely by Tuesday or Wednesday.  Of course my body wanted to be difficult.  I had a teaser on Wednesday - totally dry all morning and through early afternoon... then suddenly a geyser erupted, and I found myself in an embarrassing situation at my mother-in-law's house.  Guess who now takes a change of clothes with them everywhere they go?  That would be me.

Thursday - today- started off the same as Wednesday.  Nice and dry.  My appointment was at 3:30pm, so we decided to head to Gainesville early, have a nice lunch beforehand, and then go to the doctor.  Made it through lunch just fine.  There must be something about that darned doctor's office... because as soon as I was called back... here came the waterworks.

It wasn't nearly as bad this time, and between Peter and myself, we managed to present clean and mostly dry to the PA.  She approved and sent us on our way with a new painkiller prescription and an appointment for 4 weeks from now.

Why the new painkillers?  Well, I have percocet.  They worked for a couple of days, though they knock me out pretty effectively.  But after that, even when we went down to 1/2 a pill - I end up with a splitting headache and very little pain management.  My new pills are loritab. I don't think I've ever had them before.  The doc says they contain a different formulation of codeine that should help me avoid the headache.  I don't think she's ever had a request like mine before - I wanted something milder than the percocet (to avoid the headaches) but stronger than tylenol (because that doesn't touch the pain)... she was a little confused for a bit because I didn't just ask for something stronger than the percocet.  Heck, I don't like taking the pills I'm already choking down - why would I want something stronger?

So, that pretty much catches us up to current events.  I no longer have ovaries, fallopian tubes, uterus or cervix... and I no longer have cancer.  I guess it's a pretty fair trade.  What I do have are cases of uncontrollable tears ... when I see baby outfits or infant toys and realize that even with a miracle it's no longer possible for me to grow another baby.  It makes me realize all over again how glad I am that I chose to keep my son.  But the question of "am I still a woman" can wait for a later note. Today, I'm just glad that for once I trumped the odds... Today, I made it.

Cancer-free never felt so good.

well, that was silly

May 1, 2011 at 5:48pm
We cannot go to visit the Aunts on Wednesday.  That's the day before surgery and I'll be on eating restrictions and all sorts of things.  Not a good day for a long car ride.  Hmmm.  So the updated schedule is:
Today: clear everything out of the living room into Ryan's room
Monday: Tallahassee, pick up bed, clear everything out of our bedroom into the living room, assemble bed in our bedroom.
Tuesday: Apollo Beach to visit the Aunts
Wednesday: Finish straightening up the bedroom and move bedroom stuff out to shed.
Also... clears only after noon, nothing after midnight.
Thursday: surgery

we are "go" for slice and dice, T minus 4 days and counting

May 1, 2011 at 1:14am
The 29th went better for me than it did for the space shuttle.  Endeavor had a scrubbed launch, I had a mushroom ravioli lunch.  Yeah, ok, bad puns aside, the day was exhausting but the results were worthwhile.

First, the 8:40 am appointment at the hematologist.

Checked in.  Got my sticker.  Was wearing a plain T-shirt this time, so no creative positioning.  Receptionist calls me up.
"Ok, you have a $50 co-pay."
"It says your insurance has a $50 co-pay."
"No.  I have a $20 co-pay."
"Let me go see."
She heads off behind a cubicle wall.  I wait.  She returns.
"Well, according to your insurance you have a $50 co-pay"
I've been trying to pull up the website while she's been away, but for some reason it isn't taking my pin number.
"That's interesting, considering last time I was here it was a $20 co-pay and my insurance has not changed in the last 9 days."
"Well, I'll have them print it up for you and you can take care of it when you're done I guess."

This did not bode well for the day.
Before I can sit back down properly, I'm called back.
Hop on the scale.  Well, there's some good news.  I'm down 18 lbs since this whole mess started.  That's taking it off faster than is healthy, but at this point, I'll take whatever good news I can get.  Then we're off to the vampire cave.  Back into the too-tall chair.  With the pinchy blood pressure cuff.  At least it reads on the second attempt this time.
Two vials of blood later and I'm shown into a room to await the doctor.

Doctor arrives within a few minutes.  Yay, my hemoglobin and hematocrit levels are up.  Yay, my cell size is returning to normal.  We're still in the "low" zone, but they're closer to where they should be, and that's promising.

I mention the excruciating pain I had after the IV iron.  We're talking can't-walk, can't-bend, shrieking-at-the-slightest-movement kind of pain in my hip joints and across my lower back.  She says, "well, some pain is normal after, but it's gone now, right?"
Uhm, no, no it isn't.  I mean, I can move now, but the pain is still there across my lower back.  The cramps still hit across my rib cage when I twist a little.  My hip joints ache continually.  It freaking -hurts- thank you very much.
"Well, that's odd. It should have been gone within 24 to 48 hours.  But it's easing off, so you should be ok."
"But I feel like crap."
"But your levels are going up, so you should start to feel better soon."
"I feel worse than before."
"But your levels are going up, so you should start to feel better soon." -- this one accompanied by furious typing on the computer, several enter key hits and her standing up with a bright smile that somehow didn't seem very... real.
"Ok, we're done, you can check out down the hall and let's make an appointment for a couple weeks from now so we can check those ferritin levels again. How about the 13th?"
"My surgery is on the 5th.  I doubt I'll want to ride this far the week after."
"Oh... oh yes, that's right.  Well, let's say the 20th or so then. Make that appointment on your way out."

And... she's gone.

We go to the check-out desk.  I've since resigned myself to a $50 co-pay, thinking it's most likely a specialist thing or something... the girl at the desk says, "Ok, I see you have a $20 co-pay."


I look over toward the receptionist who checked me in.  She catches my eye briefly, then hurriedly looks away.  Interesting.

We pay the co-pay, make an appointment, and head off to the next doctor.

My appointment isn't technically until 1, and it's still a bit before 10, but I am hoping that I can find out that we can do the hospital pre-op stuff in-between rather than waiting around.  Nope, no can do.  Have to see the gyn/oncologist first, then get sent over to do pre-op.  Ok... so we'll go get lunch.

But it's before 10.  And breakfast just doesn't seem very appealing.  So we go to the mall to wander around until things start opening up for lunch.  I'm already tired, but we're walking and walking and talking and it's alright.  We tried out several benches.  Finally, 11am approaches and we decide on Romano's Macaroni Grill.  Considering neither of us had breakfast, and I'd lost all I'd eaten the day before, it seemed a good choice.

We sat outside on a bench in the sunshine with a nice breeze blowing and waited for them to open.  Lunch was nice.  Yay, for mushroom ravioli. We lingered over lunch.  Partly because I started getting nauseous about 10 minutes in, but persevered.

After lunch, we headed back to the gyn/oncologist's office.  Comfy chairs and free wi-fi.  Not a bad combination.  I lost part of lunch.  We were called back promptly at 1.

Weigh in.  Hmm, one scale or the other is off, because I don't think I ate 5 lbs of food for lunch.  I prefer the first scale.  Blood pressure is up, but the cuff was dodgy.  And it's off to the conference room.

Nurse comes in and gives me the rundown on all the procedural stuff for the surgery... clears only after lunch the day before... nothing after midnight (I'm a gremlin again!)... the usual.  No "Go-Lytely" this time, but I will have to have a "cleanse"... fun times.

Doctor comes in and explains everything about the procedure.  What they hope to do... what they might have to do if the robot can't do it... that they might have to take out my abdominal lymph nodes in order to properly stage the cancer.  It's all somewhat overwhelming.  I mean, I could have what amounts to an outpatient procedure - if the robot can do it and everything comes out easily and the lab says the cancer was contained completely - I actually might get to go home the same day as the surgery.  That's kind of stunning.  If I have to have a standard incision or if other things have to be removed or if there are other difficulties, I may end up in hospital for up to 3 days after.  Surgery on Thursday... out either late Thursday night, Friday afternoon or Sunday.

Another co-pay and we're off to the hospital pre-op.

More forms.  Paying a massive amount of money.  Apparently this surgery will cost $21,000.  At leas, that's what they expect to bill the insurance company.  I had to pay my portion of that in advance.  Cancer is expensive.

Then... another blood draw.  This nurse stabbed me about an inch above where the gal got me earlier and in the same vein.  I tried not to whimper too loudly.  Then an EKG, so a cardiologist can say that I'm ok for surgery.  The tech sent Peter to a waiting area and took me into the room.  I hopped up on the bed, laid down, she stuck on the electrode thingies and 5 minutes later I was electrode-free and walking down the hall to get Peter so we could go home.

I had lost the rest of lunch somewhere along the way, so as a reward for being good, we went to Long John Silvers.  I had overcooked clams and some freaking delicious crab cakes.  Someone was being arrested outside.  We gave a guy parked next to us a jump start for his truck. When we were done... a matter of 2 minutes or so... he said "Thanks! What do I owe you?"

Owe us?  Uhm, nothing.  Nothing at all.  Happy to help.  You have a good day, now.

I am confused.  He asked if we could give him a jump.  He supplied the cables.  It took all of 2 minutes.  Maybe less.  We had agreed to help him.  Why the heck would he want to know what he owed us?

If anything, give someone else a helping hand sometime.  Nothing is owed for common human kindness and courtesy.

We came home.

I slept.

And now.  Now I'm still having the pain in my lower back and hips - but that's ok because it's getting better with time, I suppose.  I haven't thrown up today, so I don't have to call my doctor and have her cancel the surgery pending a gastric enterologist poking and prodding me for some elusive blockage.  And that means, in 4 days I'll be under the knife for what I truly hope is the very last time.

But first.  Monday will see us in Tallahassee - picking up a bed.  Wednesday will see us in the Tampa area - with 2 of my brothers, visiting my 2 aunts.  Thursday... Thursday I'll be at hospital by 9:45am.  11:45am is surgery time.  Peter will be posting on his facebook and making the usual phone-tree calls once anything happens.

And right now... it's almost 1:30 in the morning... and I'm going to bed.

I vant to draw your blood... Muahahahaha

April 16, 2011 at 1:01amI had no idea what to expect when going to the hematologist today.  Oh, I knew they'd be drawing blood, but I had no idea what else they would do or, more importantly, if it would hurt.

Check-in was mostly normal - though they use a "tagging" system for their patients.  Once you sign in, they give you a sticker with your name, your birth date and your doctor's name on it and you must wear this on your shirt while you are in the building.  Odd, but ok.  I happened to be wearing the FGC "Stay Alive, Don't Text and Drive" T-shirt, so I slapped the sticker on the phone, just below the skull and crossbones. At least -I- was amused.

Off to the back... onto the scale... whoot! I've lost another 3 pounds.  Then I remembered I've been harfing up nearly everything I eat lately, so maybe that's not so good, but hey... I'll take what joy I can find these days.

Off to the vampire cave.  I mean, the comfy chair with the nice big table things instead of arms.  Or the chair would be comfy... if my feet would reach the floor!  I am so short.  But I digress.

First, vital signs.  Slapped on the automatic bp cuff.  No worries.  Temp, ok. Pulse, ok.  O2, ok.  Cuff inflates... ouch! pinch pinch pinch... nurse... walks away.  Wha?  Invalid reading.  Cuff deflates and inflates again... still no nurse.  Ouchhhhhhhhh!  I'm whimpering.  Peter is asking if it's hurting.  Uhm, yeah, it is.  Different nurse person arrives.  Glances at machine - still no reading - pays no attention to me when I try to tell her it's pinching badly, just hits the reset button on machine and walks out.  Owwwwwwwwwwww... another inflation... I can feel my inner arm being caught in folds of the cuff... teary-eyed.  First nurse comes back and asks if I'm ok.  I say that the cuff is pinching.  She says "oh" and looks at the machine.  Waits.  Machine reads pressure.  It's high.  DUH!  She goes "ok" and rips off the cuff.  I have lines of angry red bruises down my inner arm.  She says "It really was pinching, wasn't it. Hmm." Then turns to other nurse person and starts going on about not being able to find a butterfly... ok, that's not good.  They start searching everywhere... finally go to another room and she returns with one.  She puts the tourniquet on, but it's very loose so the veins aren't popping up very well.  She finally settles on one, swabs it, sticks me.  I'm looking away because I don't care to watch the actual stab.  Whimper.  I ask, "did you get it?"  "No. But I feel it, give me just a second." *needle wiggle, dig, dig, sharp-deep stab* "Owwww." "It's ok, I got it."

TWELVE vials of blood later... a pad of gauze and a bright pink elastic band holding it in place... I'm staggering to follow her to a room.

In the exam room.  Filling out "new patient" paperwork packet.  This is fun stuff.  One of the questions is "describe your mood"  I wrote: "pale green."  I wonder if anyone actually reads this stuff.

Time passes.  I need to find a restroom... peek out of the room, spot one, dash for it.

I return, having lost most of lunch, but feeling better.  Peter tells me the doctor popped in moments after I left.  Of course she did.

We wait.

Doctor returns.  She's very nice.  And 7 months pregnant.  She doesn't look it.  I am mildly envious.

Good news!  She reviewed my CT results from the test yesterday... and they are GOOD GOOD GOOD!  The report says that the lymph nodes do not appear to be affected and that NO signs of spreading appear in the surrounding area.  Now, that doesn't mean it hasn't gone through the wall of the uterus, but it definitely lifted a weight off my shoulders.

Everyone keeps asking me if I have abdominal pain.  They look surprised when I tell them I do not.

The doctor had the results of the CBC already - they do that one in-house.  She said, "oh, your hemoglobin IS very low. oh my!"  I asked for the number.  She said, "8.8."  I said, "actually, that's pretty high!" This elicited several moments of confusion on her part until I explained that I'd been a 7.5 only last week and was functioning with it as low as a 4 just last year.

So, what does the hematologist do?  Well, if I eventually do need chemotherapy, she'll be the one to administer it.  Right there, in the office.  But for now, she's concentrating on finding out if I have any clotting problems and working to get my hemoglobin levels up high enough for surgery.  This means I'll be having IV iron administered.  A "big dose" of iron, in fact.  2500ml worth.  It will take 4-5 hours.  She tells us that there's a 1 in 1000 chance of having a bad reaction to the IV iron, but they only see it once a year or so and they've already had theirs for this year.  I think she was trying to get me to relax.

The 20th, I'll be back in her office getting Iron pumped into my veins.  Within a week, she says, I will stop craving ice.  Within two weeks I should be feeling -much- better as far as energy levels, dizziness and sleepiness are concerned.  Within 4 weeks I should be doing great - because the red blood cells have a 28 day life cycle, so all the ones I'll have in 4 weeks will have been exposed to the higher levels of iron and will be nice and healthy.  That's the theory, anyway.

My upcoming doctor schedule looks like this:

Wednesday, April 20, 8:30am, Iron IV

Friday, April 29, 8:45am, test results with hematologist
Friday, April 29, 1:00pm, pre-op with gyn-oncologist

Thursday, May 5, 9:45am, surgery

Oh, and somewhere in there I have to take two exams for Map Analysis (online), take the final exam for Geology (at FGC), post 50 maps on a map blog for Map Analysis (that's this weekend's project), get to Tallahassee to pick up a california king waterbed frame and standard mattress from a dear friend and ... call my mother.  Oh, and I have to convince people that they do not need to travel miles and miles and miles just to come see me after surgery.  Really, I'm out of it right after... and apparently I say silly things... but it's not worth it to make a trip all the way here to see.  Unless you're looking to get a youtube video out of it.  I am NOT suggesting anyone videotape me coming out of anesthesia.  Stop it!  Put the camera away and no one gets hurt.

nuts and their nutshells

April 9, 2011 at 12:31pm
1. I have to see a hematologist for a full blood workup including clotting factors and have intravenous iron administered to bump my hemoglobin levels up.  Last check (Thursday) had me at a 7.5 out of 40 and that is not high enough for...

2. Surgery, I'll be having another one.  The oncologist is going to try to use robots (how cool is that?) through two small incisions and a hole punched above my belly button to do the hysterectomy.  If the adhesions are not prohibitive, this will allow me to be out of the hospital the following day and has a much shorter recovery time - she says it's a 50/50 shot that she'll be able to do it this way - if she can't, she'll go ahead and use an incision and do it the old-fashioned way.  Either way, all the girly bits are coming out.  They'll be examined by the lab while I'm still under anesthesia, and that will determine the actual stage and grade of the cancer and whether she needs to excise some lymph nodes and/or other tissue while she's in there.  Also...

3. I must have a CT scan prior to the surgery, just to give a better idea of what the doc is going up against and to help determine the scope of the surgery.

The good part:  This is all going to happen within the next 2 weeks.  I'm not certain of any of the dates for these items as yet, but it looks like the CT and hematologist will be next week and the surgery will follow the week after.  Oh, and from the physical exam, even though I appear to now have the flu (yes, again! let's hope it's not another round of H1N1, I don't know how many swine I can handle in a lifetime!) my lungs sounded clear and heart was good and all my girly bits are in the right places and appropriately mobile with the uterus only a little enlarged.  Doc is optimistic.

The not so good part:  Week after this is finals week.  I have a geology exam that I'm scheduled to take on the local campus along with two online exams for my map analysis course.  The excel course is going to have to be a write-off as there's no way I will be able to travel to Tallahassee to write the exams.

I am still planning on starting the 6 week summer session the beginning of May, ending mid-June.  I'll be taking the two courses I need to finish my bachelor's degree.  Yay for almost being finished!

the night before the rest of my life

April 7, 2011 at 8:22pm
Ok, I'll admit it, I'm terrified of tomorrow.  I am torn between not wanting to know and needing to know and damn it, they've given me far too long to think about this cancer stuff.  Yes, cancer.  I can say it.  I can read about it.  I can even sort of think about it pseudo-objectively.  I cannot, however, reconcile these online images and cold medical terms to the fact that right now, inside of me, are these clusters of abnormal cells getting larger and larger and there isn't a thing I can do on my own to stop them.  Control is completely out of my hands, and I definitely do not like it one single bit.

Tomorrow and tomorrow and tomorrow, if only solace were so easily found.  Tomorrow I find out the numbers.  Tomorrow my life becomes divided into Stages, Grades and Survival Rates.  Tomorrow, tomorrow, the sun will come out tomorrow.

Stages I and II have decent survival rates, 50% or better
Stages III and IV not so much.

Stages I, II and III will result in surgery.
Stage IV doesn't bother.

Grades have never been this important - even when I made straight A's.
Grade 1 isn't so bad - it's a naughty little set of cells, but they're sitting there doing their thing and trying not to bother their neighbors.
Grade 2 - they're starting to spread, like running bamboo or thistles... rather annoying to the neighbors, but still pretty well contained. Probably want to call the homeowner association and issue a reprimand.
Grade 3 - starting to blend in and make everything look the same.  Even amounts of bamboo and thistles all over this yard and the neighboring yards.  Not nice.  This is the one that gets brought up loudly at the association meetings and demands for eviction are eloquent and protracted.
Grade 4 - you've let it go untended too long - all the property values have plummeted and there's not a thing you can do about it.

Tomorrow.  In fact, now that I've had the records sent over and filled out the seven pages of paperwork the new doctor sent, I am supposed to "relax" until tomorrow.  14 hours from now I'll be sitting in the oncologist's office.  I'll be outwardly calm.  I'll hand over my paperwork, my insurance card, my ID.  We will pay the copay for the visit.  We'll sit down on those awkwardly stiff chairs in the oppressive waiting room and do just that... wait.  Wait for a new nurse to call my name.  Walk to the little room with the cold table and the stirrups.  Mustn't forget the stirrups.  In another setting it might be erotic.  Here, it's just another shade of terror.

I am vaguely amused when they say "relax" - because whatever I'm doing, relaxing isn't it.

I am even more amused by the offices that stick ostensibly cute posters on the ceiling.  As though a puppy or kitten would make this more bearable.

I want to see an office that puts "Happy Bunny" posters on the ceiling. Let's show a little realism.


Somehow I hope you never come.

testing, testing, 1... 2... 3

Thursday, March 3, 2011 at 3:46pmI failed my geology test.  Not a big deal.  The grade is based on the higher of the test averages or the final.  All I need to do is rock the final (did you see what I did there?  geology. rock. yeah. that was me.)

Thus began my day.

And then I went to my gyn follow-up from the last surgery.  As we suspected from the continued blood loss, the surgery was not successful.  My hemoglobin level has continued to fall.

Sometimes words get in the way of what needs to be said.  In trying to find a way to approach the actual subject, I've only flirted with the edges.  I received more news today.  The latest lab results show a reason for my continual blood loss.  The initial biopsy was incorrect.  I do, in fact, have uterine cancer.  In "several areas."

If you've been following these notes and my ongoing health saga, you'll remember that when a hysterectomy was attempted in January it had to be called off due to extreme scar tissue adhesions throughout my abdomen.  At that time, my doctor informed me that no one in their right mind would go ahead with the hysterectomy in my condition - that if I did it would be a minimum of a 6 hour surgery with a team of surgeons and I'd have an 85% chance of not making it.  That's a 15% chance of successfully waking up from the surgery - even less of a chance of coming through with no complications.  Now she says that where the risks were too high then, at this point the risks of NOT doing the procedure are too high.  In other words, if I choose not to take the risk of the surgery, I will die.  She is not an oncologist, so we didn't talk about timeframes, but the reality of the situation is slowly sinking in.

Forgive me, my friends, if I am not my usual upbeat self for a little while.  I'm still processing all of the information from today.

computer woes and control issues

February 28, 2011 at 6:24pm
If it's not one thing, Murphy's Law will come and deliver something even worse.  My wonderful computer - which has given me absolutely NO trouble in the years I've had it... worked just fine last night, but this morning gave me a "no boot sector found on hard drive" error.  Yikes!

My first thought - Oh no! My novel!  Granted, the novel is saved on there - in its final edit form... but I have copies of it saved elsewhere - so that is somewhat easily recoverable.  Annoying, but not disastrous.

My next thought - All my work for my incomplete from last semester - for my favorite instructor - which consists of 5 or 6 sets of short essay answered discussion questions, all my research for the final research paper, the rough draft of that paper, along with another essay are all ONLY saved on that hard drive.  One file folder.  In one location.  I am so worried that it will be gone.  I know it's kind of silly to worry - either it is ok or it isn't and either way I have no control over the situation.

It's kind of like last night.  Last night was rough.  But I had to buck up and deal with it.  There was no option for alleviating the pain, so I had to find a way to work through it.  No control over the situation.  It's scary to not have control over something as fundamental as one's own body. I realized that when I let my mind go still and accept that this is how things are, I am able to somehow move past the pain, at least enough to be able to function.  I guess that relinquishing control can sometimes actually be a means of regaining control.  Or maybe it's all an illusion.

terminal velocity

February 25, 2011 at 6:05pm
As it becomes increasingly obvious that medical science is unable to fix my issues, I'm compiling a list of places I'd like to go and things I'd like to see and do before the inevitable happens.  Don't get me wrong, I'm doing my best to stay positive more often than not... to see the up-side more than the down... to do my best to prolong the quality time I have remaining and to look on each day as a blessing to be treasured.

So many people have touched my life in so many ways that I could not possibly compile a list of thank-yous or even a list of friends.  Instead, I will live my days in as cheerful and full a manner as I possibly can, and hopefully I will be able to give a few more people a smile, a hug, a shoulder or simply a listener when they need one.

I know I can get moody and grumpy from time to time, and during these times I will endeavor to put as brave a face on things as I possibly can.  Brace yourself, though, if you ask me how I feel, I won't lie to you. Nor will I sugar coat the truth.  I will simply tell you how I am feeling at that moment - whether it is good, bad or otherwise.  Really, honesty is so much easier, and then we can move on to something more important.

So, my list... and this will most likely be expanded and changed and rearranged as the mood strikes me... I'd like to have your input as well.  Please feel free to comment with things you think I might like to see or do, or something you've done or seen that has made a deep impression upon your life.

Life is for the living, get out and live it.

1. Visit my maternal aunts in Apollo Beach.
2. Walk along the beach with a giant bag of tortilla chips, feeding the seagulls.
3. Visit my mother in Missouri.
4. Finish my bachelor's degree.
5. Stand on Landis Green and scream at the moon before finals week.
6. Sleep in a hammock.
7. Visit my son in Louisiana.
8. Nom freshly boiled cajun crawfish in mass quantities.
9. Listen to live bluegrass music.  Preferably outdoors.
10. Visit Babci, Aunt Helen, Stephanie, David and Tiffany in Miami.
11. Meet Tiffany (see #10)
12. Have sushi and a drink with Silas Wilson.
13. Talk to Deanna McKinney... and have her tell me all about how Travis has grown and find out if she still has/uses that teacup.
14. Talk with Candace Ward about Caribbean Ghosts.
15. Talk with John Gillette about Paraguay.
16. Publish my novel.  Even if I have to self-publish.
17. Do a small book signing tour with my novel - Louisiana, Missouri, Florida.
18. Clean up my yard.
19. Clean out my house.
20. Finish the living room and master suite projects.
21. Go to Silver Springs with Peter.

Now it's your turn... what else should I do or see? where else should I go?

hearts and flowers and implements of destruction

February 17, 2011 at 6:09pmWe don't really celebrate Valentine's Day.  Something about a Hallmark holiday loosely based upon a massacre that just strikes us as a bit odd. That said, I made Peter a card.  Well, I used crayons on a piece of printer paper.  It was sappy.  It was cute.  It meant more than some generic store-bought thing ever could.  He surprised me with a planter of hyacinths.  Pink hyacinths - I didn't have any pink ones.  I have blue and white and red (er, very dark pink?) and grape, but these are light pink.  And they're starting to bloom and smell so freaking good... yeah, he wins.  But then, so do I.

Marring the holiday was the scheduled surgery for the next day.  I had my bloodwork (CBC et al) done Friday.  Had typing and cross match done on Sunday.  Was told "don't take off the bracelets" meaning the plastic crinkly one with sharp edges and the thinner thermal paper one with the stickers that like to jump off onto everything around them (for the blood typing.)  And then... Monday evening we received a call that the surgery had been rescheduled until Friday.  The doctor assured me that the bloodwork I'd already had done would be fine for then and told me not to take the bracelets off.  I was good.  I made it through Monday and Tuesday... getting grumpier and grumpier because the thin one was on so tight it cut into my wrist and the wide one was crinkly enough that I couldn't sleep - every time I moved it would sound like a cellophane cat toy and wake me up. Wednesday I'd had enough.  With near surgical precision we cut the crinkly one off along the line where it joins.  Ahhh relief.  then we lifted the edge of one of the stickers and cut the blood one off... and many sighs of satisfaction were heard... well, once I massaged feeling back into my wrist and got the blood flowing into my hand.  And not one twinge of guilt was felt.  I figured I'd use some creative scotch taping to get them back on before surgery. No worries.
Wednesday... ahhh.
Thursday... ah... wait, what was that? Hospital called - just reminding me that I needed to come in for type and cross match bloodwork before surgery tomorrow.
What?  Called them back.
Told them the doctor said I'd be fine with what they'd already done.
On hold.
No, I needed to come in to do type and cross match.
But I've already done that.
When was it done?
On hold.
You're sure it was Sunday?
Yes. I'm sure.  Says so right on the bracelet.
Let me call the lab.
On hold.
On hold.
really sucky music
On hold.
hold hold hold
la la la la la
hold hold hold
try not to fall asleep while on hold
la la la la la
No, the lab says you have to have it done again because that test is only good for 48 hours.  You need to come on in.
*sigh* Ok then.

Get to hospital.
I'm here for pre-op bloodwork
admissions lady: I don't have any orders for you.
I was called and told to come in... surgery rescheduled... need new type and cross match... blah blah blah...
Let me check for orders.
wait wait wait.
It is now past 2, Peter needs to be at work by 3:30.
wait wait wait.
Oh, here we are.  Sign this, give me your ID.  copy copy copy
Sign here and here and here and here and here and here and here and initial this one and did you wash behind your ears this morning and sign over here too. Oh and here's your ID.
(I may have exaggerated about the ears thing.)

Take this to the lab.

Go to lab. Wait. Push buzzer.  Buzzer doesn't make any noise. Wait.
wait. wait. wait.
Are you being helped?
Nooooo. Not yet.
*takes paperwork*
Ok, have a seat.
wait. wait wait wait.

Oh, look, the phlebotomist is the one who left needle tracks on my arm last Friday.  Joy.  *sigh*
wait wait wait.

My turn.
So, which arm do you want this time?
*show her the track mark she left last time on one arm and the bruise I have from the last type cross match on the other arm.*
We'll go with this one (the one she tracked), but we'll go easy this time, hmm?
Sounds good.
Oh, just a little stick.
*eyes widen* It's not there yet?
Just about *STAB* There we go.
tube, tube, tube.  Oh, wrong one, just a second.  rummage, rummage, new tube, tube. releases tourniquet.
Oh, just a second.
Here we go, going to pull it out now... *SCRAPE*
*sucked in breath* Eeep.
Now *with gauze over stick site* push down HARD on this so it doesn't bruise like your other one.
(Oh, I see, that was MY fault??!!??)
*tapes down gauze with three strips of tape*
*eyes flutter closed, almost in a faint*
You ok?
A little dizzy.
Did you have a good lunch?
Uhm, no, I had an instant breakfast a few hours ago.  I didn't KNOW I'd be stuck today.
Well, it's probably just your blood sugar then.  You can go. Oh, and you don't have to keep that big bracelet on, just the thin one.  They'll give you a new (crinkly) bracelet each time you come in.
*stand up, about fall over, grab file cabinet to stay standing*
Ok, have a good day now.
*she walks out, leaving me to stagger out of the other door and across the hall to Peter*

Pain shooting through my arm, but not making me scream like last time, so I figured that maybe, just maybe this was a better stick.

Got to Mom's.

Took off the gauze, realized I'd been bleeding rather profusely into the gauze.  Still, it had stopped now, so all good.  Look at the stick... *sigh*  tracked.  again.  AND bruised.  *headdesk*

So, tomorrow morning (Friday) we will leave the house around 6am in order to get to the hospital by 7am in order for them to have "plenty of time" to get me ready for my surgery which is scheduled at 8:30am.  If all goes well, the surgery should take a relatively short time.  Less than an hour, closer to half an hour/40 minutes or so.  Then wakey-wakey and home I go.

I'm tired. I want to curl up and sleep.  But I need to tackle the mound of homework that I'm not going to want to do tomorrow.  Here's hoping all goes well.

terrible Tues

February 8, 2011 at 9:17pmPeter was called in for a few extra hours - good news as he's been shorted on hours for the last several weeks.
He left for work - I received a call from the doctor's office.
Keep in mind, I'm not yet supposed to drive.
They needed me to come in.  Now.
Because my hemoglobin levels are so low, they were trying to get me onto the surgical schedule as soon as possible, but if I were unable to get to the office today, surgery would have to be pushed back to the end of February and perhaps early March.
So I start making phone calls.  Mum - is in town with her Geri-Actors group.  Darn it. Sis - is out on calls. Darn it.
Ok, I call Peter's work.  It is almost 2:30 at this point.  Luckily, he was already in the parking lot.  He had to drive all the way back home, get me, drive me to to the doctor's office in town, then bring me back home and drive back to work.  Ugh.  I felt awful making him do that, but had no other choice.
All this to pay the doctor's percentage of the surgery so they could get me on the schedule.
So far not so bad, right?  Well, we're not quite done yet.
Surgery is scheduled for February 15th.  Pre-op at the hospital is February 11th.  And when the office manager noticed my hemoglobin levels she scheduled another pre-op at the doctor's office for February 10th.  Why?  Because if my hemoglobin level slips at all... I won't be going in for pre-op on the 11th, because I'll already be there startingl on the 10th for another round of transfusions and another several day long hospital stay while I play vampire.  Damnit.
5 units thus far since October.  Now I'm looking at a minimum of 3 more.
I -really- don't want to have to have more transfusions if I can avoid it.
So, since Peter had to rush back to work, I begged Mum to take me back to town to do some iron-intensive grocery shopping.  Came home with clams, shrimp, several cuts of beef, a bunch of green leafy vegetables and all those things I've been eating since childhood that are supposed to make the iron more available to my system.
I'm already sick of eating.  But the alternative keeps me going.

I missed the best part.  Or the worst part, depending on how one looks at it.  All this time the doctor has been saying "ablation" "ablation" "ablation"... and somehow I didn't think through the procedure.  When I was in for scheduling, the procedure is actually a d&c, hysteroscopy & ablation.  I've had d&c's before - every time I've been curled in the fetal position for 2-3 days after.

Right now I just have to trust the doctor... that she knows what is best and that she is confident in the success of the procedure.  And I do.  But that doesn't stop me from being terrified.

This is our last option.  The last one.  It has to work.

Time to drink my vanilla chai (15% DV Iron per serving)...  I guess the good news is that I don't have to worry about getting too much iron.

So.  I wonder what tomorrow will bring?

hello, blue Monday

February 7, 2011 at 8:07pmAnother installment in the continuing saga of my messed up health issues.  Enjoy.

I knew my hemoglobin level was down.  And when I can tell that it is down, it means it's very much down.  Since the bleeding has been greatly reduced by the medication (well, most days... ok, some days... ok, it's better than before almost all the time, but before was so horrendous that "better" is a relative term)... and since my incision seems to be healing up nicely (except for that one spot... oh and that other place... and well, maybe one more tiny issue - but for the most part, nicely healing), I figured things would be taking care of themselves - not as much bleeding, not as bad on the hemoglobin front.  Makes logical sense.  Since when does my body make any sort of logical sense? Yeah. Never.

So, the nurse took one look at me and the little frown started at the corners of her mouth.  Uh oh.
"Are you taking your iron?"
"Like you're supposed to?"
"Yes.  Well, I'm out of the Ferrex, but I'm back to taking the otc stuff."
"Mmm Hmm. Every day?"
"Well, it's low. Very low."
"Tell me I'm not going to have to be transfused again."
"We'll get this taken care of."
"Without more needles stuck in me and little bags of blood?"
"We'll get this taken care of.  It should have started going up by now."
"I'd really like a solution that doesn't involve another transfusion."
"We'll get this taken care of."
*nurse leaves*
Peter and I proceed to read the pamphlet on Endometrial Ablation - the procedure I have been so adamantly against.  Ugh.  It's still scary, but I'm realizing we're down to option "Y"... and EA -is- option "Y"... option "Z" is just saying "fuck it" and letting nature take its course.
*doctor walks in*
*no preamble or niceties*
"We're scheduling you for an ablation.  You're getting this done.  We have to get this anemia under control"
*she sits, scribbles on the notes*
"I know how you feel about this.  I will be there with you - I'll be the last one you see before you go to sleep and the first one you see when you wake up.  I promise you, I will be the only one working on you.  I'll be right there with you through the whole thing."
"okay.  and I'll be completely out?"
"Yes.  General anesthesia.  Just like before."
"Alright then, go up to the desk, get them to put you on the schedule and we'll get this taken care of."
*she leaves, we go to the desk*
"How are you doing today?"
"uhm. apparently bad enough that I am going to have another surgery"
"Oh! ok. Well I'll have to talk to your insurance again - so I'll call you, if not today then tomorrow."
"Y'all have a good day, now!"
*sigh* "okay"

The only redeeming factors are that instead of the scraping, freezing or burning that doctors used to do to perform EA, they now use what are alternately described as "sound waves" (by the brochure) and "electrical charges" (by the doctor) - so I don't have to be hung up on the whole "burning" thing... which is a big deal to me.  However, the result is the same - the lining and the inner layer of muscle of the uterus are destroyed - resulting in the uterus no longer having the ability to produce a lining - and therefore no more of the 363 days a year of well, bleeding.

What this means for me - first, another surgery - granted it is a quick and "minimally invasive" one. second, another period of recovery when I haven't yet recovered from the last surgery. third, because my condition is so severe, I will once again be drugged into oblivion. fourth, if by some chance this doesn't work - I am out of options.  This is it - all the eggs are in this one precarious basket.  If this doesn't work... I will slowly but surely bleed to death.

Yeah. I'm scared.

more pointless grumblings

February 4, 2011 at 7:02pm
So, I find out on Monday if I'm dying or just paranoid.  See, the bleeding has slowed down significantly.  And by significantly, I mean to a trickle rather than, say, Niagra Falls.  This should be a good thing!  This should be fabulous news. This should herald the entry of a new phase of a happier life.  A life where my primary thought process is no longer focused on calculating how far I am from a ladies room.  There's only one teeny tiny problem.  My hemoglobin is still dropping.  And by dropping I mean that for the first time I am actually feeling the effects of the drop.  Even when I was around a 6 I wasn't this tired, this sore, this... winded.  So.  If I'm not bleeding but my hemoglobin is still crashing... there are two possibilities.  Either I am bleeding - but it's an internal bleed... or my little hemoglobin factories are no longer working.  Either way it doesn't look good.  In the first case, I'd have to be opened up again - which, as anyone who has been following this saga will understand, is not a good situation.  In fact, it is a situation that would require a team of at least 6 surgeons and an operation lasting 6 to 8 hours.  And that's just to clear out the scar tissue adhesions.  Who knows how much longer it would take to locate and stop the bleed.  And considering my doctor told me flat out that "no one in their right mind" would agree to have themselves opened up again in my condition... yeah.  The term "I'm screwed" comes to mind.  The shutdown of hemoglobin creation invites an entire new host of issues - the least of which is an immune system "reboot" where the docs use something akin to chemo to shut down (read "kill") my current setup, then do a transplant of good bits that will hopefully take and replicate and get my system running correctly once more.

Herein lies the problem.  First, I have very clear lines of what are acceptable measures and what are extreme measures when it comes to my body and the procedures used upon it.  6-8 hour surgery falls into the extreme range.  Immune system reboot - falls WAY into the extreme range.  Second, I cannot go on having blood transfusion after blood transfusion just to keep me going.  Every time I am hooked up to those little red pouches increases the associated risks.

One well-meaning friend suggested that I might lessen those risks by donating the blood myself.  I had my first genuine health-related chuckle from that one.  Yes, that works for healthy people who are planning to undergo surgical procedures.  It does not work for fixing deficiencies in one's own blood.

Finally, I am tired.  I am weary to my bones.  And although it may be true that "someone my age shouldn't have to go through this" - I am going through it.  And with every breath (inhaled through the nose to the count of three and slowly released) -- with every heartbeat (rapid today, average in an hour, through the roof when at rest, sluggish later on) -- with every pill and every inhaler and every spray into my nose -- with every screaming joint and every frozen bone -- with every random bruise and every clump of lost hair -- with every teardrop, mostly shed in private unless I slip and lose control of myself -- with every frustration of having to read and re-read a passage over and over to make myself understand things that used to come with lightning fast cognition -- with the agony of eyes that ache and head that throbs -- with all of this... "it" is winning.

meds kicked in and I...

January 9, 2011 at 7:53pm
This will be a collection of the silly/stupid/awkward things that happen when I'm on pain medication during my surgery recovery.

Took my meds and went to the restroom.  Fell asleep.  For a little over an hour.  Mum came to check on me, knocked on the door and asked if I was in there/alright.  I said "Yes" and tried to stand up. My leg was very much asleep.  I ended up going down to one knee with a resounding thud.  Head tapped the far wall.  Took me a minute to figure out where I was/what was going on.  Everything is fine.

Took my meds and thought they weren't working.  45 minutes later, I'm nodding my head like a bobble-head doll and drooling on myself. Everything is fine.

graphic detail included. you've been warned.

January 7, 2011 at 10:30pm
This will be brief as I just hit the button for my demerol and I won't be coherent for long.

Long story short - I had surgery this morning, but nothing was removed.  When the doctor got me opened up, she found that my past 2 abdominal surgeries have left massive adhesions.  Rather than risk nicking a bowel or something worse, she sewed me back up.  I could go to UF and have the procedure done, but, as the doctor put it this evening, no one in their right mind would want to risk all the danger inherent in clearing out the scar tissue.  She informed us that basically my entire intestinal tract is stuck to the inside of my abdomen.  Her recommendation is ablation.  She does understand my issues with that procedure, but it is really the only option available to us.

So after saying that, she tells me about a new medication.  We have made the tentative decision to start the medication and see how it goes while I heal from this morning's slice-and-dice.  If the medication works, great.  If not, then I will have the ablation.  We are not, however, going to attempt the hysterectomy again.

And that's where we stand.