Monday, June 23, 2014

Surgery today.

Well, today is the big day.  I leave in about an hour to drop A off to play with Princess Cheerio and Cheerio Champ and then off to surgery for me.  I'm nervous, but mostly I just want to get it over with.  Just drug me up and let's go!  I'm totally not looking forward to more hospital stays.

So yeah.  That's that.  See you soon!

Tuesday, June 17, 2014

Nervous.

I am feeling more nervous about this surgery than I have about any of the others.  It makes no sense.  Those were brain surgeries, which is still crazy to me.  I know this one will hurt more, so maybe that is why.  I'm trying to keep it out of my mind until at least Sunday, but it's hard because it is getting so close.  This month has just whizzed by.

One thing I am trying to focus on is the book sale that will be going on this next weekend.  We are going on Friday morning.  All of the books should be $3 or less, so that means I will probably go a little overboard.  We saved up for it.  I don't feel so bad because fiance goes to a few gaming conventions each year that he saves up for.  I only look forward to this as far as fun extras (financially) go.  I hope I will find some good books this time.  I will also be looking for books to use for homeschooling for A.  She has been super interested in learning about the human body lately, so I hope to find some anatomy type books and also books for learning about what is going on with her vs. boys.  We have one, but I would like to find a better variety.

Hopefully I can get through these next few days without much stress and anxiety.  I also hope next week goes smoothly.  Surgery sucks.  :(

Thursday, June 12, 2014

A little explanation.

Sorry my promises from my last post didn't come to fruition.  It has been over a year since I have written anything in this blog.  Some of it has been laziness.  Especially from the time I wrote the last post until the beginning of July last year.  After that, I do have a reason.  I will try to explain.

At the end of June last year, Fiance, A, and I took a week-long trip to PA to visit Fiance's family.  They still have a room set up much like he had growing up that we use when we go.  Here at home, we have a king-sized bed that is fairly firm.  The bed we sleep on in PA is much smaller, probably full size, and it is much much softer.  I fell asleep with A in the bed at one point and woke up with a very stiff feeling neck.  It was stiff for the rest of our trip and for a few days when we got home.

I didn't think anything of it.  I have gotten a stiff neck before and it went away after a while.  Unfortunately, this one didn't.  My neck only felt stiff at first, and then after a few days it started to hurt some.  That pain got a little worse and seemed to move down into my upper back and shoulders.  It honestly felt like a muscle spasm so that is what I thought was wrong.  After a few more days, the pain got worse.  It got to the point where I couldn't sleep at night and no position I tried to lay in would work.  Everything just hurt.  Finally, it got so bad that I would just sit on the edge of the bed and sob.

I decided it was probably time to get it checked out.  I went to the ER and told them I thought I slept funny and told them how bad the pain was.  They sent me home with muscle relaxers and told me it was just a muscle spasm.  A few days later, it hadn't gotten better so I went back.  They said the same thing.  Both times, no x-rays, no examination, no real questions at all.  Just that it was a muscle spasm and that I needed to take the muscle relaxers.

Finally I got an appointment with my regular doctor.  He sent me for x-rays and gave me more muscle relaxers.  I got a call a few days later from him.  He saw the spasms on the x-ray, but he also saw a cyst inside my spinal cord.  He told me that he was going to refer me to a neurosurgeon to take a look at it.

Let me just say right now that I am so glad that I was referred to this particular neurosurgeon.  He is extremely nice, explains things to me in ways that I will understand and actually makes sure I understand, makes me feel calm before surgeries, and doesn't pretend like he knows everything but will find out something with me if need be.

The neurosurgeon ordered an MRI of my cervical spine.  It showed that I not only had a cyst in my spinal cord, but a small tumor.  Yes.  INSIDE my spinal cord.  He ordered another MRI on my head because he saw something on my cervical spine MRI.  There were two more tumors on my brain.  One was on my brain stem and the other on the right, back side of my cerebellum.  This concerned him.  He asked if I had ever heard of Von-Hippel Lindau syndrome.  I had not, but he said it is basically a genetic disease where tumors develop on the brain, in the spinal cord, possibly on the kidneys and pancreas, and possibly in the eyes and ears.

Since he suspected VHL, he ordered another MRI that would scan my thoracic spine.  Luckily, my thoracic spine is clear of tumors.

I had surgery in September of 2013 to remove the tumor on my brain stem since it is the one that concerned him most.  The surgery itself went great and he was very pleased with it.  It turned out to be a hemangioblastoma, which he said is NOT cancer.  It is just an exceptionally bloody tumor.  I spent a day (and my birthday!) in the ICU because of the nature of the surgery.  After that I spent a couple of days on the regular floor before I got to go home.  The surgery left me with a scar running down the back of my head that still feels a little weird.  Other than that, I have had some numbness in my left side, particularly my left leg, since the surgery but I have gotten used to it and it doesn't keep me from doing anything.  The neurosurgeon thinks it is probably the tumor in my spinal cord pressing on something, but we won't know that for sure until he takes it out.

A few weeks after I came home, I started getting headaches.  They got steadily worse and worse until I called the neurosurgeon.  He did another MRI of my head and found fluid hanging out around my brain.  The spinal fluid wasn't draining correctly so he decided to put a shunt in.  So, in October I went in for another surgery to place a shunt.  It is on the top left part of my head, with a tube running under the skin, behind my ear, and down into my abdomen.  I recovered quickly from that surgery as well, but it hurt more because in addition to the incision he made on my scalp to place the shunt, there was also one on my stomach to position the tube.

Not even a week after that surgery, I noticed clear liquid draining from my stomach incision.  It wasn't just normal drainage.  It was constant.  My shirt would be soaked after a while.  He sent me for another MRI (yay more MRIs!) and it showed that the tube had coiled itself up.  He went in again (!) to secure the tube.  He just used the same stomach incision, which means the painful wound took longer to heal.  I can't complain, though, because since then everything has been fine.

After the first surgery, my neurosurgeon referred me to an oncologist, just in case.  He did some testing and ordered an MRI of my abdomen.  They found tumors on both of my kidneys and some lesions on my pancreas.  I was then referred to three more doctors.  This time a urologist, an audiologist, and an optometrist.  He wanted to check my eyes and ears for tumors, which came back clear.  The urologist did some more tests and ordered a biopsy of the largest tumor on my left kidney in December of 2013.

It came back cancerous.

It has been a scary road since then.  Cancer is such a terrifying word.

It is renal cell carcinoma, which isn't uncommon to find in patients with VHL.  They are fairly sure the lesions on my pancreas are only cysts, which is good news.  I wasn't too thrilled with the urologist, though.  After he called me and told me they found cancer, I went in for another appointment to discuss what treatment would be.  Mom, Fiance, A, and my friend who is a nurse all came with me to ask questions.  The urologist seemed to be a little uncomfortable with the questions and I feel like he just wanted to get out of there.  So bah.

In March, my neurosurgeon did another surgery to remove the tumor on my cerebellum.  I can honestly say that I am sick to death of the surgery haircuts.  I am able to hide it well, but they definitely don't try to leave you anything to work with.  Jeez.  That surgery went smoothly as well.  In fact, I have recovered quickly and nicely from each of the 4 surgeries so far.  The neurosurgeon tells me every time that he just can't believe it because usually people don't bounce back so quickly.  And here I am, feeling like it should be quicker.  Oh well.

I have since been referred to another urologist who I like much better.  The neurosurgeon referred him to me and I think it works out better this way because they know each other and can be on the same page as far as my care goes.  I am scheduled to have the largest tumor removed from my left kidney on June 23rd.  It is a bit scary because they will have to cut open a large part of my stomach to get to the kidney.  Knowing how badly it hurt when they made the incision to position the shunt tube means I know this one will hurt much worse.  I have a second surgery scheduled for August 4th to removed the next largest tumor, which is on my right kidney.

It has been a crazy road so far, not without it's scary moments.  However, I try to be as strong as I can and do my best to stay positive.  It isn't always easy, but I think I am getting better.

I apologize if any of this was hard to read.  It is currently 3:30am and it's hard for me to keep coherent thoughts long enough to write them down.

I will update more after my surgery on the 23rd.  I will also do an A update sometime soon.  If you want, check out the mommy blog I co-author with three friends: The Case of the Missing Cheerios.  I also started a book blog if you would like to check that out: Books, Coffee, and a Thunderstorm.

Sunday, January 27, 2013

Returning and a new blog!

I wanted to jump on here and say hello!  I am planning some different things for this blog in the next couple of weeks.  Stay tuned for that!

The Day Zero project will begin again starting tomorrow.  I will be keeping track of my progress as I go along.  Does anyone have any tips on how to keep yourself motivated/accountable to staying on track?  I would love any advice.

Also, I wanted to announce the start of a new blog that I will be contributing to along with two of my very dear friends, Tori and Heather.  It is called The Case of the Missing Cheerios.  The format will be one topic each week discussed by each of us individually.  Tori will be posting on Tuesdays, Heather on Thursdays, and yours truly will be the Saturday blogger.  I hope you decide to check it out!

That's all for now.  I hope you enjoy the new layout!

Saturday, September 15, 2012

Yes, I killed the fish.

I was going to say that moving in April put a damper on my blog writing, but who am I kidding?  I've been the world's worst blogger.  If my blog were a pet it would have starved to death months ago which wouldn't do much for my reputation as a pet owner.  I'm not so bad at keeping land animals alive, but aquatic friends are quite another thing.  Fiance said my (former) fish tank was the Auschwitz of the fish world.  I totally resent that.  I didn't MEAN to kill them.  To be fair, I think the last four brought something home from the store.

Anyway, I digress.

I want to update more often mainly to just have a place to document our lives, but also to possibly connect with like-minded people (which I've probably already said before).  I should have been writing regularly for two years now but I let the opportunities pass and didn't grab a hold of the memories.  I hope to change that.  Addie turned 2 last week and her personality is so fun.  I want to document the funny things she says and the silly personality quirks she has. 

For example, she learned the word "impossible" today and has NO idea what it means.  So she walked up to Fiance and said, "Daddy, I love you IMPOSSIBLE!"

Fiance: "Oh, do you love mommy impossible, too?"

Addie: "No."

*sigh*

I also basically abandoned my 101 Goals in 1,001 Days project.  The only place I had it posted was on here where I never saw it.  I REALLY want to finish a list, even if it contains some things that fail, but I have to stop forgetting it even exists.  There is a program I have on my Nook that keeps track of lists and tasks which would work perfectly to keep it in front of me.  I am also going to put a copy up somewhere, like the refrigerator.  (Cue ridiculous is-your-refrigerator-running joke.)  I have already chosen my goals so I'm set to start on Sept. 20th (my birthday!).  I would just start tomorrow but hey, why not start on my quarter of a century birthday instead?  Easy to keep track of, anyway.  Wish me luck!

I have quite a few ideas for blog posts in the coming days/weeks.  I've been writing topics down so I'm hoping that will help me stay on top of this thing.  At least I won't run out of things I'd like to share.  Seriously though.  I need to invent a device that will light a "Write-that-blog-entry!" fire right under my ass.  Does anyone need a day job?  :P


Saturday, April 14, 2012

Moving.

Things are super busy here.  We were just approved for an apartment about an hour from where we live so we could be closer to Fiance's job.  I hate moving.  I especially hate the packing and unpacking.  It wouldn't be so bad if I could just stick things in boxes and go, but I can't.  I have so much stuff I don't need or use so I can't justify dragging it with us to just take up MUCH coveted space.  I plan to purge as I go, and then probably purge again because I'm sure I'll change my mind on some things.  Hello, new life.

I know I updated about chocolate last post, but... meh.  It didn't go well, and I need to come up with a better plan.  I'll try to update further on that in the near future, but right now it just makes me depressed.  Haha.

Sorry this is so short.  I shouldn't even be on here right now.  I should be packing.  I just wanted to update a bit and let everyone (meaning all... 2 of you?) know what's been going on.  Wish me luck!  I need all that I can get.  (Mainly because I'm severely LACKING in motivation.)

Tuesday, March 20, 2012

:-/

Part of my goal for this blog is to keep track of the things I change in my life that make me a healthier person.  I know I haven't been writing about that at all, but honestly that's only because I've been putting it off.  The truth is, I KNOW what the next change will be, but when change is like this, I don't like it.

For those of you who may not know what I mean by "next change", I'll explain a little.  I need to lose weight (A LOT of weight), and the dieting thing doesn't work for me.  I've tried it numerous times.  Unfortunately, I don't have a lot of support in this, so I'm doing things a little differently.  I know that in an ideal world we would all be able to change every bad habit we have in an instant and be perfectly alright with that, but it sure doesn't happen that way.  At least not for me.  You're SUPPOSED to be able to look at your eating habits and exchange every naughty thing you eat with something healthier, and control your portions and yada yada.  It all sounds very good, and makes sense.  What doesn't work for me, though, is that you're supposed to change everything all at once, and that's too much change in a short amount of time.  I can't get used to it.   I've always taken it to heart when someone says, "Don't call it a diet, call it a lifestyle change."  The problem is, they then expect you to dive right into a diet and eat completely differently than you did before.  How does that work?!  I'm fully capable of starting a diet, and even doing well for a little while.  It never lasts, though, and somewhere along the line I fall face-first right off the bandwagon.  I've thought about it so many times and tried to look at it from different angles, and really every weight loss plan is the same.  That's when I decided to do it my own way, and everyone else be damned.

I decided to pace myself with the changes instead of trying to do it all at once.  Habits don't form overnight, and when you're trying to change too many at a time, it's nearly impossible.  Eventually I plan to pick up the pace a little bit, but for now I'm focusing on one MAJOR habit I have at a time.  The first change I made was soda.  I gave it up on January 1st and now it's no longer a habit of mine.  That brings me back to the second habit in line.  This one is scary for me.

My name is Leslie, and I'm a choc-o-holic.

There, I said it.

Chocolate.  It is my vice.  It is my drug of choice.  It is SO HARD to let go of, but I have to do something about it.  I know I don't have to give it up completely (talk about recipe for failure), but I have to learn moderation.  It's no secret that I need to lose weight.  Moderating my chocolate intake will be a HUGE step in that.  I know giving up soda is a good first step, and I've been doing GREAT with it.  But if I'm eating way more chocolate than I should be, it's not doing me much good in the long run.

So, my next goal is to completely give up milk chocolate (white chocolate isn't that tasty to begin with, so not a big deal to stay away from for me) and only have a small portion of dark chocolate no more than twice a week.

This is going to be a tough one, but I can do it.  I KNOW I can.  *whimper*