Tuesday, July 29, 2008

A watched pot...boils over.

For more days than I care to tally, my emotions have been under scrutiny. Friends, family, doctors, acquaintances, my hairdresser, my counselor....all have watched, most have commented. I've made more jokes about the breakdown I was going to have "when all this is over" than can possibly be funny. Most have said I'm holding it together well, they are surprised I'm still standing, they wouldn't blame me for cracking just a little.

All the while, everything has been simmering just under the surface. Like a pot of water in the moments before the boiling point is reached, there has been a current underneath my daily thoughts and emotions. Some steam escaped, there were times I freaked out, choked up and broke down. Some came in the form of a good cry, an argument with my husband or a panic attack. A notable one occurred after I made the mistake of watching a video of a vaginal hysterectomy to satisfy my need to know what it involved. (It was not nearly as easy a video to handle as the one of a laparoscopic assisted supracervical hysterectomy....that one didn't leave me wanting to rock in the corner). I know it's likely not normal to want to watch those videos at all, but I needed to know. I panicked, and almost cancelled the surgery. Mostly, though, I've tried to hold it together by focusing on other things.

As it turns out, while I'm still in a considerable amount of pain and it's clear my recovery is going to take time, having the surgery was definitely needed. While I feel very rough right now, I can tell there is going to be improvement. After talking with the surgeon the morning they released me from the surgery center, I understand better what I was dealing with.

The pathology isn't back yet. We may or may not get more information from the study of my uterus, but what the surgeon was able to tell me was pretty amazing. To me, at least.

He said there was not a thing about my uterus that looked healthy. In fact, he described it as boggy, shriveled, lacking proper color and sick looking. He referred to our conversations where he asked me if I was sure I was done having children, sure I would not change my mind, and said based upon how my uterus looked it is unlikely I'd ever have conceived again. Even more unlikely I'd see another live birth, if I did conceive. We are extremely lucky to have our children.

The first bubble broke the surface of the water in that moment. The grief I have been fighting, denying, pushing down and trying to keep a lid on finally boiled over. All at once, the sadness of infertility, trying to conceive, the loss of two babies I have yet to properly acknowledge, my brother's murder, my pregnancy with my son, his birth, his illness after, my illness and the fear I'd have a surgery only to be told they couldn't find anything wrong just boiled over. I fear I may have scared the hell out of that poor man when I just started sobbing.

I tried to explain my relief at the notion this could all be over and the fears I'd had about the surgery, told him I'd been worried he'd come in and say something along the lines of "well, I took it out but I didn't really see any obvious problem. Maybe there will still be some pain relief, but I'm not sure."

He reassured me that it was very clear my uterus was quite sick, very obvious that I had to have been in a lot of pain and feeling awful with it looking that way and certain that had I not had it removed I'd have continued to hurt and feel sick. That was a validation for which I had not dared to hope.

It's not clear without the pathology whether it was just the infection that caused this damage, if my D & C earlier this year played a role or if there is something more. He mentioned the possibility of Adenomyosis, a condition where endometrial tissue penetrates and grows into the uterine muscle causing several symptoms - including chronic pain. I'm anxious to get the results back from the lab. It can be treated, but from what I've read it can't be completely resolved until menopause or with a hysterectomy.

I realize it was not entirely logical to worry there would be no obvious signs of a medical problem when the surgeon looked. I know in my heart that I was feeling pain, fatigue and a level of sickness I couldn't explain....but it seemed so strange there were times I worried I was losing it, or that others would think I was. Knowing something and knowing can be two different things.

I have a bit of extra time on my hands right now. Time where I'm not allowed to work, to busy my body with running around or taking on new tasks. I have to be still and in that stillness, the grief is bubbling to the surface. Bit by bit, I'm working on it.

Our church home, the church I was not able to attend for so long as it was outside of the radius allowed while I was experiencing preterm labor, is rebuilding its outdoor worship area. An elder has been handmaking benches, and all of them are done except one. The one my husband will help him make that will bear the names of our two babies that have yet to be fully acknowledged. This week we will call the elder with the first and middle names of the children whose feet never touched the ground, whose hands we never held. We will say their names out loud to another person who will literally set them in stone.

I watched the pot so carefully, afraid it would boil over when I wasn't looking, afraid I'd be trying to deal with this at a time when I simply could not. His timing, of course, is perfect. With an abundance of boiling water, time that cannot be spent on activity and a prescription for rest and hot tea it seems the perfect time to sort through all of this. If that were not irony enough, I actually received a written prescription for a device that would me take slow, deep breaths.

Someone is making sure I take care of myself now, and reminding me you can't really get cooking until the water boils anyway.


JuliaS said...

Glad to see you post and that you sound reasonably well - all things considered. :0)

I have many of the same fears as you and it is my doc's belief that I have adenomyosis. Though, my uterus is HUGE which leads to many inquiring minds asking me constantly when my baby is due . . . which opens up an ugly can of wormy emotions, but I digress.

My problem seems to be the people closest to me don't understand why this is so upsetting to me - they think I should be celebrating! Uh - okay, let some doctor neuter you and see how you feel about it, but again, I digress.

I hope that you find that physically you are feeling so much better that it makes all the anxiety, fears and worry worth the experience.

I understand about validating your lost babies. It wasn't until I gave them names I started really healing - otherwise, the whole thing was too surreal.

Many good wishes - I will continue to check in on you and see how you are progressing!

PS - where did you find those videos, I want to watch one - I'm like that, I have to know . .. I made dh videotape my sections so I wouldn't have to wonder if they really just pulled the baby out from under the table and said ta-da!

I am sorry for all you have had to endure - the loss of your babies, your fertility and those dreams, your brother, the fear of permanent forever surgical menopause - all of it; and I wish you much peace and healing.

hydrogeek said...

I wish you luck in dealing with this all. Amen to the last sentence you wrote, is all I can say.

Mandy said...

Julia, seeing the video of the laprascopic assisted supracervical hysterectomy was not bad. It made me think "oh that's not great, but I can handle that." The vaginal one, I cannot in good conscience direct you to. I'm sure now that the one I saw was several years old and not done in the most current technique. In essence, "butchered" was the first word that came to mind. If you wanted to start with Obgynet you could probably find one with the most current technique. I will say this - one of my big fears was severe vaginal pain. That wasn't the case at all. I'm sore from the gas they put in my belly to look around with the laparascope and sore inside, and roughly where my cervix was (where my other cut was). But, as long as I take it VERY easy and keep up on my pain medication it's bearable. Frankly, other than when I over do it (and I'm trying not to, it's just easy to do too much) it's as bad or better than the pain from my infection....and this is temporary.

I don't feel celebratory about the hysterectomy, but knowing I had always planned to be done having children after two, what a bad idea having more would be and how destroyed my uterus really was means that I don't feel as upset about seeing it go. Still, when certain people say "Yay, no more tampons" that just really isn't how I feel. Don't get me wrong, I'm ok with not buying anymore, but this is truly the end of an era.

In my reading about adenomyosis, there are some hormone treatments that can help from what I understand, so if you aren't truly sure about being done this is an option. It's also a cause of an oversized uterus, so may well be the case in your scenario. I'm DYING to get my pathology info back and don't think I'm going to be able to wait until Monday to ask. (at my postop)

In my case they were able to leave the ovaries, so for now I'm ok on the hormone front. We'll do yearly ultrasounds of my ovaries and a CA125 to make sure no signs of ovarian cancer pop up, given family history.

Good luck sweetie.

JuliaS said...

Mandy - thank you for all the info. Mine will be abdominally - but I still like knowing what to expect. But, most of the time I am thinking "you're gonna what??!! Oh heck no!!"

I'm with you - saying goodbye to tampons is like the booby prize and certainly not the celebration some say it is. (Though, I am not going to miss them!)

We've been the hormone route already. Started with bcps - which didn't work, then to Lupron which an 11.25 mg shot is supposed to last 3 months and lasted 7 weeks the first time and less this second time. I felt it wearing off this last time about 5 weeks after the shot. Best case scenario is I get to keep one ovary - that's my prayer. I have endometriosis also and my left ovary is pretty much written off already.

I am glad you were able to keep your ovaries - I have heard that is so much better/easier on your body, particularly when the hysterectomy patient is so young.

I appreciate so much all the info you have shared - the unknown is often scarier! Now I think, okay - I can do that or that sounds tolerable, not great - but tolerable.

Continued good wishes for healing!