Quabbin Reservoir

Thom and I spent the day at the Quabbin.  It was chilly and windy, but we managed to see all of it, with Thom pushing me in my wheelchair.  This is a picture of the tower, you can actually go up.  I didn't, but Thom went up to the top and took pictures.  It's very quiet and relaxing, I can see why people go there to hike or waterpaint or take photos.

Pleural effusion

On my birthday, I ended up in the hospital because I had fluid in my left lung.  It was making it harder and harder to breath.  So they put in the hospital to tap the lung.  That involves inserting a large needle into the space between my lung and suck out the fluid.  I was expecting them to do it that night, but they didn't. 

Then this guy (student?) comes in and does my first tap.  He was only able to get 350 mL.  I don't blame him, I blame the ultrasound tech because they are the ones who need to pinpoint where to put the needle in.  The first guy hit a very small pocket of liquid, but the second time, they hit the mother lode!  All total, they removed 1050 mL!!  I felt immediately better! I added a photo to give you a little more perspective.  They kept me overnight to watch for any complications. My total stay was 4 days.  It sucked because it was my birthday and I didn't get to spend as much time with my sister Lizz like I wanted to.  Life gets in the way all the time.

Brigham and Women's is a wonderful hospital, the nurses are fantastic (except for one).  She's kind of hippi-sh and acted like we were best friends and sat down on the arm of the chair my mom was sitting in.  A good thing she did do and told the people who takes vitals to leave me alone until the morning so I could get some sleep.  Those vital visits are so annoying.  You finally get to sleep and they wake you up!  It's like "Hey, wake up and go to sleep!"  Yup thanks.

Tanner

We found a new home for Tanner today.  She was adopted by a family with a daughter and another dog.  She'll have plenty of room to run and play.  I'm sad, but it's better for her, she just has too much energy for us, for me mostly.   Thom asked Tanner if she wanted to go for a ride, he opened the trunk to put in her stuff, she jumped into the trunk!  Silly puppy! Enjoy your new family.  Poor Max was wandering the house looking for her, it was pathetic, poor guy.  

Feeling weak today

The day started out good, Thom worked from home.

I have to do my PT 3x day, so I did those.  Hard, but I did it.  Then the PT came in and gave me more exercises, this time it's stepping up on one step with both feet, repeat with opposite foot, etc.  This one was so hard for me. This just tired my legs and feel weak.

Had an X-ray taken a couple of days ago because I felt crackling in my lower left lung (good alliteration!) and when the VNA came, I had him listen and he said I should get an X-ray, and I did.  Seems like I have the beginnings of pneumonia.  Antibiotics on board.  I'm telling you, it's the little annoying things that is problematic.  How can my body fight cancer when it has to deal with crap like this?  This is the frustrating part.  It goes in cycles.

My sister will be visiting me at the end of the month, excited about that.

Crazy. That is all.

So today, I got visited by my nurse, and Oh My Goodness!  He's an older man.

The only thing I needed was for him to listen to my lungs because I feel crackling.  That's it.  (of course that's the last thing he took care of.)  He gets all my information again (that the first nurse already took it).  Takes vitals yada yada and before I know it, he's acting like my doctor!  Well, you need an Xray of your lungs, let me call your doctor.  THEN he starts telling me what cancer is.  I told him I'll call my oncologist for myself and now he feels that he needs to call him for me!  I told him I'm going to do that, but he said he's going  to call anyway.  Seriously??  You are not here for cancer treatment, you blubbering idiot, you are here to take vitals.  He crossed the line.  I told him about my mouth sores, and he said it could be thrush, and he mentioned it 5 more times after that.  He needs to know what chemo I'm on, I told him I don't know the name.  "well you should know what kind of chemo you're on..."   But YOU don't need to know.  Look buddy, I'm being better taken care of than you would ever be able to.

Don't call my doctors, because you're going to make it sound worse than it is and my doctor would be like who the fuck are you?

As soon as he left I called the VNA and told him I don't want to ever see this guy again.  When I say I'm surrounded by craziness, believe me!

Well it's not thrush.  I'll thrush you!

Chemo causes nausea, really Brain Trust?  Are you taking stuff for nausea?  He must've asked that 6 times.  I have to warn the doctor not to take any messages from him.  What a pain in the ass for me.  Then he showed me the actual insurance letter of how many visits I get.  I said I know, but continued to hold the paper out like I don't believe him or something.  Very strange.  There were a couple of other things, but I don't remember them.

Not having a good experience with the VNA so far.  Still waiting for my bath seat. It needs to have an extension to get it over the lip of the tub, they send just a chair.  Sponge bathing stinks...literally!

Have an extraordinary day and enjoy the weather!  Wait a minute.  I just looked at that word and I'm thinking, "If my day is ordinary, why would I want extra of it??"

So make it a extra, superduper, adventurous day!

Life is Good!

Time for an update me thinks: Part 2

Today we moved the bedroom downstairs so I can avoid stairs. It's so much easier.  Weird though.

The weather today is beautiful, I'm loving it.

I have bad news.  I saw the Oncologist on Friday and he told me that he has one more chemo that he doesn't have much hope for.  There's a tumor in my spine that's making me very weak.  There are very few chemos that get into the spinal cord.  It's called Lepomenengial carcinoma.  But I'm still gonna fight.  I ain't done with you yet!  It's nothing immanent, so it ain't over till it's over babeee!

Be right back...

Ok, I'm back!

Funny story:  The VNA dropped off my commode (now we're talking down and dirty!) on the front porch.  We got home and all I saw was this pathetic little toilet sitting all be itself. No box or anything.  Made me laugh!

If there is anyone who wants to visit, please call first, I take a couple of naps during the day.  Much appreciated.

I promise to continue this blog and keep you all up to date.  I'll have better access to a laptop and computer, we're bring the desktop computer downstairs too.

I'm in good spirits, I have God, and so much support around me, I have nothing to fear.

Life is Good!

Time for an update me thinks! Part 1

I added an old post, the Ponzi House Curiosity Trip, and it nearly drove me to a heart attack.  I don't know why Blogspot puts all pics at the top of the post no matter where you want it.  It's SO frustrating.  I guess I will have to add the photos first and then type the words, because I am not doing that again!  I have 2 more trips to add, but not tonight.

So, what's been happening?  What hasn't been happening?  I became a member of a new church (shhhh, it's not Catholic! Gasp!  It's Protestant!  Gasp again!)  My mom's reaction was hysterical!  "That's not a 'real' church."  They are trying to brainwash you.  They have no sacraments.

Don't drink the Kool-Aid!

So I tell her about it.  I attended the 'real' church, a small Catholic church near the center of town.  No one really looked at me or introduced themselves, welcoming me to their church.  So here I am, new person, don't know anyone, not good.  No reaction.  Ok.

Then I told her about the Brookfield Congregation Church.  There is a greeter at the door, and if they don't recognize you, they welcome you to their church (Gasp!), have you sign the guest registry, and give you a rose sticker that alerts all the members that they have a new guest.  Immediately, I was welcomed by one of the members and introduced me to a bunch of others!  It was so warm and welcoming and everyone was actually happy to see me.  Genuine. Who's more Christ-like?  Not the 'real' church.  Mom just grimaces when I talk about it, but she sees how happy I am with this church and she's ok with it.  Thank God!

It's been about 8 months and I love love love this church and all the congregation.  I can't help but smile everytime I see anyone of those people.  It's an older congregation, but they rock!  I have found my place.  And they like me, they really really like me!  More on this church later because they will become a lifeline for me.

More on Part 2 later, I think I'm done for tonight.