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.
Monday, June 20, 2011
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.
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.
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.
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.
Me.
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.
Me.
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.
"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
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
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