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.

Roof is now fixed!

We had a roofer come today and put the finishing touches on our roof today, so it's done!  Well, half of it is, the half that was leaking.  What a relief it is to not have to worry about my bedroom ceiling caving in. 

Today was Week 1 of a new chemo cycle.  I am given anti-nausea and steroids to get rid of any side effects, but the steroids keep me awake for almost 2 days.  I'm tired, but can't sleep.  So, Thom mentioned I should blog.  Good idea, since once again, I'm slacking!  :)

But the steroids were also good in another way today.  We had a wedding reception to attend and I had enough energy to boogie the night away!!  I had so much fun!  Love to dance, just have to make sure I don't overdo it.  People say I'm looking good these days, and I feel pretty good, thank God.

I'm going to try this new thing.  I've had a jar, a "journal jar" that I've had since I kept paper journals and it's a recipe for a life story!  It reads, "Every day (or whenever in my case) select a journal slip.  Paste it to the top of a fresh journal page and fill in your answer.  Enjoy the memories."  Seems fun, and you never know where I'll end up when answering these!  Hahaha

Q:  Describe your yard as a child - did you help with the yardwork?

A:  Living in the city, we only had a postage size backyard.  My grandparents were living on the 3rd floor.  My dad made the whole yard into a garden - we were never without fresh fruits and veggies.  I remember being out there with my dad and my Nonno checking out the tomatoes and finding the ugliest, largest green worms on the tomato plants!  Eecckkk.  It had a horn on it's head and totally nasty.  My dad would just pick it up with his fingers (Yuck!), did a shallow hole, put the worm in it, and proceeded to cut it in half with his shovel and covered it up.  But I have a picture of what the yard looked like:

Imagine what it was like once everything started growing in.  One of my favorite meals was what we call "vecchie".  My mom would take the flowers from the pumpkins, mix it up with flour, Parmesan/Romano cheese, garlic, onions and water and made like a pancake mix.  Then she'd fry them.  They were so good!  :)  Good memories!'

I don't know if I've said this before, but I must say that not working anymore was a very good decision.  Now I get enough rest and "try" to do things on my list, but I'm finding that I'm busy and the day goes by so fast...but they are fun things, so it's not as tiring. 

Well, happy tomorrow!  Can't say that I'm anymore tired than I was before!  Maybe reading will tire my eyes.  Till next time, peace!

Happy NonLabor Labor Day!

Happy Labor Day, although I'm sure not many of you are not laboring!

Things are going fine here.

Speaking of Thom, he's been training for a Rugged Maniac race at the end of September.  It's a 3 mile obstacle course.  Check it out if you want:  http://www.ruggedmaniac.com/southwick-ma.html  I'm going as a spectator, hopefully I'll get some good shots.  I admire the tenacity, but all I have to say is "OH HELL NO!"  :)

I decided to stop working.  My last day of work was August 7th.  It was a very hard decision because I finally found a place where I want to be, with people that wanted me there.  But it was getting harder and harder for me to go to work everyday, even with the part time schedule.  I feel it was a good decision.  I'm feeling more rested.  And now I'll have time to do the things I've been too busy or too tired to do.  I miss the guys though, they really made it the place it is.  Miss you guys!! 

We weathered the hurricane Irene fine, but Holland, MA got hammered.  We drove through parts of it on the way back from Connecticut, and there was a hill where all the trees were destroyed and knocked over.  Some of the houses were boarded up.  It looked like hurricane alley.  Trees were splintered like they were toothpicks.  We were very lucky.

Yesterday, it was the 21st anniversary of Thom and I's first date.  I can't believe how long it's been, but how quickly it seemed to go by.  I've been with Thom longer than I have been with my parent's.  I love you more today than yesterday.  If that's possible.

I didn't get my last Chemo treatment because my platelet level was too low.  So I have 2 weeks off.  It seems to be working, but we won't know until the doctor runs more tests, and I see him on the 16th.  But I am happy to report that the numbness on the left side of my chin has gone away!!  I was surprised to wake up one morning and noticed that the numbness was gone!  Awesome!

I'm waiting to hear from Social Security about disability.  I was approved for the medical portion of it and now I'm just waiting to hear about the non-medical portion of it.  I don't know what it entails, so now we wait.  I hope I get approved.  I don't want to have to fight the decision.

Until next time, same bat time, same bat channel!

No bones about it

On July 10th, it was a Sunday, I rolled over in bed to my left and I heard a "pop" and then I heard myself crying.  We went to the hospital ER, a place I'm unfortunately used to.  Took an Xray and the doctor came back to tell me that I have a "possible" hairline fracture on my collarbone, he really couldn't tell from the Xray, but the pain signifies a fracture.  He also explained that my bones were "moth eaten", meaning they have lots of holes in it.  Sure gave me a visual.  Anyone have any mothballs?!  They told me there was nothing they could do except give me a sling and some pain meds.  Since the collarbone is not a weight-bearing bone, they can't pin it.  They can't cast it either.  ER doctors do not impress me. I can't explain how much this hurts.  You don't realize how much you need both hands until you can't use one.  The good thing is that it was my left side.  I'm a rightie so at least I can type and write.  Even in a sling, I am constantly tweaking it.  Pain shoots right to my brain, which I have documentation that I actually have a brain!!

Had another Xray at Dana-Farber and the results were more definitive.  There is a lesion right where the fracture is, and that it's clear as day.  So the tumor is eating my bone and weakened it enough that the bone just broke.  You can't see the bone through the skin or anything, but it's very tender to the touch.  Since the cancer is in the bone, it's slowly eating away at the bone.  Kinda like the old video game "Dig dug", where you have to "chomp" on the grass while staying away from the bad guys.

After meeting with the medical oncologist, we decided to have radiation.  Met with the radiation oncologist, and we are going ahead with it.  I can't get radiation while on Chemo, so I need to wait to "clean" out my system.  The radiation will be once a day for 5 days.  I got "mapped" on the machine, which means they line me up with the laser.  I got 4 tattoos, which consist of 4 dots on my skin.  This is done to make sure they line me up the same way everytime.  I'm still waiting on the time we're going to start.  The reasoning is that we kill the lesion and that in turn will allow the bone to heal, without having the pressure of the lesion against the bone.

I've had a couple of people tell me they just can't believe that I'm in pain because I don't show it.  When I'm by myself, I show it.  Other than that, you really can't tell.  They tell me I'm so "stoic".  What am I supposed to do?  Go running down the hall crying?  Complaining all the time?  Nah.  Who's going to listen anyways?  LOL

Thom has been super throughout all this.  He's taken over all the chores.  I can't tell you how much he helps.  Makes me cry as to how lucky I am.  I just don't want him to become overwhelmed with the responsibility. 

On August 4th, we lost our sweet sweet cat, Sir Winston.  Thom went downstairs to feed the animals.  Sir Winston ate extra soft food because he was so skinny due to a thyroid problem.  Winston is usually under your feet waiting to get fed.  This morning, he didn't show up.  Red Flag.  Where is he?  Thom looked around and then came up to tell me that we lost Sir Winston.  It took a second to comprehend.  I came downstairs and saw him.  He was lying underneath the sofa table.  He was in the position where he used to lie in, like he was sleeping.  I lost it.  He's the first pet I ever lost.  I was heartbroken.  I touched him, and he was so hard.  When I first picked him up from the local shelter, he came with a collar with a pewter cat tag and it had a saying on it.  I found that tag and had Thom put it on him.  He came to me with that collar, it's only right to leave him with it.  I wish I could remember what the saying was.  We buried him in the backyard.  He was such a sweet, nice kitty.  RIP

So I'm just hanging.  Hurry up and wait.