Wednesday, January 28, 2009

Oh, come on.

After talking with some hystersisters about how I'm feeling five weeks post-op, I realized that I am apparently dealing with my ovary going into shock.

Night sweats, insomnia, headaches, wild emotions and so on - super fun.

Hanging in there.

Monday, January 26, 2009

Another milestone

Four weeks and five days after my hysterectomy, the stitch on my left incision has finally fallen out. Yeah, I know, you're probably thinking, Big deal, so what?

The incision on my left side was taking much longer to heal. When I was moving from the gurney to the comfy chair in the recovery area, I managed to rip the stitch on that side - so instead of having a little 5 cm incision, I have a 20 cm gash. The stitch was hanging on on my left side because there was so much more healing to do there. It was also snagging on everything I wore and was very tender - so I am incredibly relieved to see it go.

I also took a big step forward today, quite literally - I walked my daughter to school for the first time in almost two months. It's only about four or five blocks, all told, but it was absolutely too much for me until today.

So hooray for progress!

Saturday, January 24, 2009

Sickness + recovery = very little fun

I got pretty sick this week. Unfortunately, when your body is putting all its energy towards healing you are more vulnerable to all the lovely bugs that are floating around at this time of year. It was pretty much not a lot of fun.

Feeling better, and will catch up on more posting in the days to come.

Tuesday, January 20, 2009

New research article on endometriosis

An article is being published in the New Journal of Medicine which has contains some pretty interesting findings -

A U.S. researcher links endometriosis to abnormalities resulting from defects in the early embryo. click here to read the press release.

I'm looking forward to obtaining a copy of the full article. The researcher, Dr. Serdar Bulun, has been studying endometriosis for the past fifteen years and is an adviser to the Endometriosis Research Center.

Monday, January 19, 2009

Well, duh.

I'm an idiot - I finally realized why I'm feeling so punk. It's sitting, people. You never realize how much you take sitting for granted until it hurts to do so. I've been doing an awful lot of it lately, and thus my exhaustion and pain.

So, this week, I'm resolving to lie down on the couch rather than sit. Hopefully that'll help!

Sunday, January 18, 2009

Three and a half weeks out

By the time Saturday rolled around, I was exhausted and in a lot of pain. It is frustrating to me that the most simple, basic routine of the weekdays prior took so much out of me. It is what it is - but it is frustrating.

Things that are good for the soul when recuperating - friends. A good friend came up to visit and we just spent the afternoon and evening talking, and hanging out, and it was exactly what I needed.

So if you're wondering how to support a friend in the wake of something like this, know this - that no gesture, however small, goes unnoticed or unappreciated. Just a phone call or a note can brighten an afternoon when you are struggling - just knowing that you are in someone thoughts helps a great deal. Recovery is a long and arduous process, and it's when you are weeks out and still feeling like crap that you need those little things the most.

The worst thing you can do is to do nothing. A blogger I respect tremendously recently wrote,

Now, first of all, let me reiterate that when someone is going through Something Bad, the one thing worse than saying the wrong thing is to say nothing. Nature abhors a vacuum and so do friends ... if you say nothing, don't call, don't write, you create a vacuum. Chances are good that your friend will fill in the vacuum with their own thoughts, and they often (the DRE-BFF tells me) have no basis in reality. Thoughts like, "Oh, I guess I thought we were closer than we are," or "I guess I'm really self-involved and they don't want to have to listen to me," or "They think I need to just deal with it and get over it, don't they?"

LizardEater is the mother of a toddler who has been battling a rare type of cancer called Wilms' Tumor. She's well worth reading. Before my surgery, I was donating platelets in Little Warrior's name.

Friends are an vital part of any recovery process. Never doubt the worth of a few kind words.

Thursday, January 15, 2009

Three weeks out

I've been struggling to put together a post after my post-op appointment yesterday. Everything went fine, and I was cleared in that I don't have to go back again. Stitches look good, everything's healing nicely. I'm to use my own good judgment about exercise and activity in general. I can swim or take a bath now.

I didn't get the pathology report or pictures that I was hoping for, so that was disappointing.

I'm also wrestling with the whole endometriosis issue.

They did find endometriosis on my right side, which explains all the pain in the months prior to my hysterectomy - particularly the ER and doctor visits which had everyone convinced I had appendicitis. They took care of it.

But I've kept an ovary. I'm only 37, and if we can hold off menopause for as long as possible then it's for the best. But it does leave me at risk for developing endometriosis again.

My surgeon put the odds at 50-50.

I'm choosing to be optimistic, but living with this disease, you get used to unfair twists and turns, and there will always be that little fear - will it come back? Have I gone through all of this, only to have to have more surgery in the future?

Endometriosis is such a rotten bastard, isn't it?

Monday, January 12, 2009

Today I overdid

Today, I totally overdid it.

I'm both proud of and chagrined by my walk this morning. I went to the local mall and walked around this morning, early, while all the mallwalkers were cruising along.

I swear, an 80 year old woman lapped me at least twice.

This, for me, is frustrating. I've promised my husband I will not set foot in the gym until my surgeon gives me the green light - which will be at least three weeks from now. But I am just not good at sitting still. In the past couple of years I was finally able to get my act together and get physically active again, and it has done wonders for my health. I enjoy working out. I enjoy the challenge of it, and feeling strong and powerful - particularly important when fighting a chronic disease that robs you of your energy and makes you feel as if your body is betraying you.

And today I went for an eensy little walk, and I am completely exhausted.

I have to remember that my body is doing a lot of work right now, healing from the surgery. But it's frustrating when doing something as simple as cooking dinner makes you need to take a two hour nap.

It's DeLurking Day 2009!

Who knew that there was such a day? But my blogging friends inform me that, yes, there is - so come on, don't be shy! No one likes posting in a vacuum... so say hi. If you have any questions, go ahead and ask them. Anything I'm not addressing? Speak up.

I'm glad you're here!

Ovaries

It wasn’t long ago that having a hysterectomy automatically meant the removal of the cervix and the ovaries. It was, quite frankly, easier for surgeons to simply remove everything while they were in there and so that’s what they did as a rule.

Current research, however, has provided evidence that the ovaries play an important role in women’s overall health. Studies have indicated that oophorectomy, or removal of the ovaries, may lead to an increased risk of cardiovascular disease and hip fracture. You see, those hormones your ovaries give off – even after menopause – do a lot of work. Estrogen helps with muscle coordination, protects your heart, your brain and your bones. It influences your memory and your skin. Additional studies demonstrate a link between oophorectomy and Alzheimer’s disease.

Nowadays most surgeons give careful thought to oophorectomy, and try to avoid it whenever possible. If a woman’s ovaries are diseased or otherwise compromised, then removal may be necessary. In some cases your surgeon may be able to leave one ovary – and believe it or not, that one ovary will take over and do the work of two.

If you have a hysterectomy and are able to keep your ovaries, your body will go through menopause as normal. It’s business as usual as far as they’re concerned!

Saturday, January 10, 2009

Two and a half weeks

A lot has happened in the past few days.

On Thursday, I left the house by myself and drove for the first time since my surgery. It was just a quick errand, but provided exactly the psychological boost that I needed.

On Friday, I woke up and went about my morning without once feeling significant pain. I curled up in my desk chair to read my email. I moved easily. I have turned a corner.

Of course, I am also fighting off a bad cold, and let me tell you that coughing is not pleasant when you have abdominal stitches.

And that's where we are at 2 1/2 weeks.

I am looking forward to my post-op appointment next week.

Wednesday, January 7, 2009

Patient satisfaction with LSH high

As I find interesting or helpful articles, I'll note them here on this blog.

This article is from Reuters Health, and is titled "Patient satisfaction high with cervix-sparing laparoscopic hysterectomy."

Two weeks and one day

Every day I feel a little better.

Today I am smoked because I had a very full day yesterday. My daughter had an appointment in the city. My father-in-law, bless him, came over and drove us there and back - while I'm cleared to drive by my doctor, I don't feel comfortable doing so yet, at least not for a long trip like yesterday's. There's a lot of snow and ice, and I worry about my reaction time or what would happen if I had to slam on the brakes or something. I'm hoping to try driving soon, but Mother Nature is conspiring against me.

So anyway, yesterday involved lots of walking, sitting upright in uncomfortable chairs and so on, and it took a lot out of me. I'm really getting frustrated and impatient, but trying very hard to be kind to myself and keep my eye on the big picture.

My daughter is taking excellent care of me. I automatically went to pick her up yesterday, and she stopped me - "Mama, you can't do that yet!" Smart kid.

This has been a tough week in general... my husband went back to work, and my daughter back to school. Things are close to normal, but not normal. Meals have to be cooked, which is an exercise in frustration - everything takes me longer and requires much more planning. There's laundry and dishes and all of that, and I try to leave some of it for my husband but hate doing so.

But an end is in sight. I'm even made tentative plans for a dinner date with friends in a couple of weeks. We'll reschedule if we need to, but it's giving me something to aim for and to look forward to, so I'm hoping that helps me move along.

I have a couple of informational posts I'm working on, and hope to have those up soon.

Sunday, January 4, 2009

Useful product alert

Thought I would share a tip - there is a product out there called the Bella Band or the Tummy Tube (depending on who's making it). Basically, it's a tube of thick nylon which you can wear around your waist. It's designed for maternity wear, but I have found it fabulous.

The Bella Band serves two purposes - it helps you fit into clothes, and it covers your belly. While recovering from surgery, your belly will be swollen and tender, and it will be either impossible or incredibly uncomfortable to fit into your regular pants. With the Bella Band, you can leave those pants unbuttoned and pull the band over them. And with your belly covered, you don't have to worry about your shirt riding up and exposing your gorgeous stitches and such.

For me, there was also the added benefit of feeling like there was a little support for my belly. No more worries about my insides oozing out of my incisions! (No, this isn't a rational fear or even a remote possibility, just one of those idiot things you sometimes can't help but feel.)

A word to the wise - you may want to purchase this via the internet or send someone else to the store if you are feeling emotional about fertility issues. For many women, even if they are done having children or are beyond childbearing age, having a hysterectomy is a profound loss - you will never, ever have another pregnancy. No accidents, no twists of fate, no miracles need apply. You're done. Game over. And if you are wrestling with the feelings surrounding that loss, having some perky clerk in the maternity store pepper you with questions about your due date will not be helpful, nor will the mailings you'll subsequently receive be welcome.

They warned me there'd be days like this

So today is a not so hot day. Physically, I'm doing ok - still pretty sore, still having to pay close attention to what I'm doing and so on. I spent all of yesterday downstairs sitting on the sofa, and believe it or not, sitting on the sofa can be exhausting and painful. I overdid it, should've taken a break or a nap or something.

Reading about the experiences of others can be helpful, but it's important to remember that we're all individuals and there are a lot of factors that play into how we recover. I read about a woman who went for a mile long walk into town after her LSH, and I held her up as my standard - and now I'm disappointed because I'm not in that same place, which is just dumb of me. In addition to my LSH, I also had endometriosis removed, so I'm pretty sore. I have to remember that.

I'm deliberately avoiding getting into too many nitty-gritty details about my surgery because I have not had my post-op appointment yet, so I don't have the full story, and I am have a lot of questions I want to get answers to as well.

Anyway. In addition to the physical crap, I'm dealing with a boatload of emotions. I'm all over the map right now. It isn't fun at all. I'm frustrated with my recovery, I'm panicky because my husband goes back to work and my daughter goes back to school tomorrow and I feel like life is moving ahead and I'm not going to be able to keep up. I'm mad that it's snowy and icy so I can't safely go for a walk around the block, which is what I'd love to do.

And mostly, right now, I am so angry at endometriosis. I am angry at the needless suffering and the lack of awareness that leads to that needless suffering. And I'm angry that my daughter is at ten times the risk of developing this horrible disease because of stupid genetics.

Anyway.

Onward and upward.

Friday, January 2, 2009

Hysterectomy - the basics

So - let’s talk about hysterectomy, on the basic level. A lot of people aren’t sure exactly what a hysterectomy is or what it involves.

A hysterectomy is the surgical removal of the uterus. Plain and simple. But there are lots of choices to be made with hysterectomy, and that’s where all those pesky and confusing details come in.

You may have heard the terms partial, total and radical. But what’s the difference, and what do they mean?


A partial hysterectomy means that the upper part of the uterus was removed, leaving the cervix intact. This is sometimes called a subtotal hysterectomy, or a supracervical (‘above the cervix’) hysterectomy. The cervix is, in fact, part of the uterus – it’s actually Latin for ‘neck’, and so the cervix is basically the neck of the uterus.

A total hysterectomy refers to the removal of the uterus and the cervix. Sometimes people will call this a complete hysterectomy.

And then there’s the radical hysterectomy. The radical hysterectomy involves removal of the uterus, the cervix, the upper portion of the vagina. Lymph nodes, lymph channels, and tissues that support the uterus are removed. A radical hysterectomy is most commonly performed when a woman has cancer, although there are other conditions for which it is recommended.

Now, you may be wondering why I haven’t mentioned ovaries yet. Most people assume that a hysterectomy automatically involves the ovaries – but that isn’t necessarily so! And that, my friends, is another post entirely.

Thursday, January 1, 2009

Day 9

This morning I woke up feeling like I'd overdone it working out the previous day.

It's mind-boggling - just over a week ago I had major surgery!

I'm continuing to take it as easy as possible, knowing that the gentler I am with myself for the first two weeks, the better for my recovery overall.

And I can say with absolute certainty that I feel worlds better than I did prior to my hysterectomy. This was absolutely the right decision for me.