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.

Status update and A Revelation

I get a lot of slack for not updating this blog on a regular basis.  I've said this before, but I don't want this blog to be a "chore" to write, out of obligation.  I love all you who are faithful and keep checking the blog.  That means a lot.

Things have been quiet and nothing has inspired me to write, until my previous entry, about the cones and my mother.  My week consists of:  rising around 4:30 am, getting dressed, grabbing a banana and an Ensure bottle and heading off to work.  I work Tuesday-Friday from 6am-1pm.  Working 40 hours a week was getting to be extremely draining and I couldn't do it anymore.  This new schedule is working well for me.

I come home and take a nap, sometimes for 2-3 hours.  Thom comes home, we eat dinner, and I'm usually in bed at 8pm.  I have a routine that I play some iPad games for an hour to unwind and go to sleep around 9pm.  Then the day starts anew.

I've recently added a new "routine".  I have discovered a minister named "Joyce Meyer", she's on in the early morning.  I DVR it, so I am not sure what channel she's on.  I was up on my day off and was just flipping through the channels.  This woman's voice stopped my in my tracks.  She was talking about how God loves us and has a plan for all of us.  This struck me hard.  A plan?  For me?  Really?  Intrigued, I continued to watch and listen.  Quoting the bible, she teaches people about how to live in peace by loving God.  Growing up Catholic, I assumed I loved God.  But Catholic School never taught me HOW to love God.  Going to church every Sunday doesn't automatically mean you are walking in God's grace.  I had stopped going to church because I was feeling like a hippocrite.  I would go, sit there, recite prayers from memory, while not listening really.  Just spent the time thinking about what I was going to eat when I got out, going shopping later.  I wasn't present.  So I stopped going. 

I never stopped praying, though.  I've always "talked" to God all my life, but He never spoke back, or that I ever could hear.

Getting diagnosed changed so much.  Obviously!  The first year from diagnosis, I felt lost and SO out of control.  My body let me down.  I didn't trust it, and didn't trust much else.  I became depressed and frightened. 

So I went back to church.  In the words of Abraham Lincoln, "I have been driven many times upon my knees by the overwhelming conviction that I had nowhere else to go. My own wisdom, and that of all about me, seemed insufficient for the day." I had nowhere else to go.

I sat in the pew and prayed.  Then I looked up at the altar at this poster and it read, "Jesus, I trust in you."  I felt a sense of peace IMMEDIATELY.  I decided at that instant to give my fear, depression, and cancer to God.  I remember this day so vividly.  I exhaled and felt all the negativity fade away.  I would stop getting in my own way of healing and having to be in control. 

Fast forward to the present.  I have a couple of audio books of Joyce Myers that I listen to on the way to work.  I still feel at peace and because of Joyce Meyer, I'm learning how to listen and to try to be a blessing to people every day.  She said we need to get ourselves out of our own ways. 

I was afraid to tell people of my beliefs and faith.  This country has become so "religious phobic" that you worry about offending someone.  I'm not trying to convert anyone, or push Joyce Meyer's tapes.  But I've decided because of her that I will not be ashamed anymore to admit that I believe in God and his grace.  I won't talk about it unless I am invited to or asked about it.  People have different beliefs, and they are all my friends, I have Atheists, Wiccan, Jewish, and Buddists as friends.  We all need something to believe in that is bigger than ourselves. Whatever it is, I hope it gives you peace.

Wow, this entry went in a totally different direction that I had originally planned!  

Thanks for hanging in there!!!  Much love and peace!

Cone Head

I spent June 4th-13th with my parents to spend time with my sis Lizz and my niece and nephew.  Good times!  One event stood out as a pretty funny and I wanted to share.

My mom, myself, Lizz and the kids decided to go to the mall.  That's not the funny story.  The funny part is when we went home.  Coming down the road that turns off our street, there were traffic cones blocking the road.  To ANYONE else, this would be a small hint that you need to turn around and find an alternate route, right?!  Nope, not to my mom.  She stops and looks at the cones.  Decides that she can SQUEEZE between two of the cones and carry on.  So she did.  Lizz and I are yelling at Mom.  I see a guy down the street waving us back (they were paving the road).  I told mom that he's telling us to go back.  Doesn't matter, she continues down the road and goes to turn onto her street...blocked by cones also.  Now my mom is put out.  We look down the road and we see a cop making his way toward us.  He was just walking slowly toward us.  I told my mom that the cop was coming.  She proceeds to BACK up the road.  The cop is still sauntering toward us.  She runs over one of the cones and doesn't know what to do.  The cop reaches us finally.  It was like a horror movie, no matter how fast or far you run, the psycho always catches up to you.  I just started laughing. 

My mom gets out of the car and yells to the cop, "I'm sorry officer!".  I'm slinking down in my seat because I'm totally embarrassed.  The cop didn't say A WORD!!!!!  He just looked at my mom with a face that said, "Lady, are you insane?!  Did you NOT see the cones in the MIDDLE of the road?!?!?"  Not a word, his face said it all.  But it wasn't over, my mom was so put out that she drove down a one way street!  Best laugh I had in a bit!!

Here's a current pic of the kids:

Love love love those kids!!

Hare and Hair and 4 years

Hope everyone had a nice Easter and Passover!  Mine was great!  Went to my parent's house and ate and ate and ate!  Maybe my mom's cooking is the only kind of food I can keep eating?!  I've been losing weight (I lost 3 lbs in a week).  I'm trying not to lose anymore, but sometimes I don't have an appetite (which, if you know me, NEVER happens!!).  Like last night, I didn't eat dinner, I just wasn't hungry.

My hair is coming back slowly!  Currently, I have a Mohawk, it's hilarious!  I'm so badass!  The sides of my head are getting dark fuzzy hair.  It's coming back, but sooooo slowly!  I am not a patient person!

Got another blood transfusion on Saturday.  I really do feel like a vampire!  My red blood cells were low again.  Normal is about 30, mine was ~25.  Not really really low, but enough for me to feel it.

Today is my 4th anniversary of having cancer.  Wow.  This day always has mixed emotions for me.  On one hand, I'm ecstatic, I'm still here!  On the other hand, it's just a reminder that I have cancer.  Always brings me back to the day I found out.  But of course it will..  It seems as more time goes by, the less this day really bothers me.  Which is good.  Time does heal "all" wounds.  For the most part.

Not much has been going on.  But like I said before, I prefer no drama.  Spring is here, the weather's getting warmer, the sun's out, it's not so bad!

Checking In

Things have been relatively quiet lately.  This was my week off of chemo, what a nice break.  I'm now taking shots of Neupogen for 3 days after chemo to increase my neutrophil (white blood cells) count and it's been working because my levels are now higher than normal.  Super immune system?  I wish.

Chemo went fine last Saturday, but I got a blood transfusion because now my red blood cells were low.  It's a balancing game.  God bless the people who are able and donate blood.

I finally removed my name from the bone marrow registry.  It made me pretty sad because it cemented the fact that I can't help anyone anymore.  I can't donate blood and now my bone marrow is no good either.  Back in 1998, I was called as a potential match!  It was exciting!  I went in and got further testing done.  It was between me and one other person, and the other person was a little better matched.  That's as close as I have ever gotten to helping someone.  Ah well.  There are other ways to help, need to find them.

I've cut my work hours down.  I don't work on Mondays anymore and I work about 6 hours a day.  It seems to be working out well for me.  It's just enough, by the time I get home, I konk out on the couch and sleep.  I tell the dogs when I get home, "Assume the position" and they do!  Tanner's at my feet and Max sits where Thom sits.  It's quite funny!  Oh, and Shadow my cat comes to snuggle too.  If you know or have heard of Shadow before, he wasn't always the most friendly cat.  When we got Sir Winston (our other cat), I don't think I saw Shadow for 6 months, he just hid upstairs.  Then he slowly came out more and more.  THEN we got the dog, Tanner, and he went back into hiding again.  He's probably thinking, "I just got used to the new animal in MY house, I finally come out of hiding and you bring and EVEN BIGGER animal into MY house who likes to chase me around and smell my ass, how degrading.  Now cut the shit!"  Hahaha

It's supposed to be in the 70's today and I was looking forward to taking the dogs to the lake.  Yes, I was going to attempt it.  Tanner's easy to occupy, just give her a tennis ball and that's all she'll care about.  She can retrieve until she drops dead.  It's funny, Tanner is SUCH the retriever, Max?  He could give a care.  He'll retrieve it once, and that's it.  Animals are so funny.

I see the doctor next week.  If anyone is curious, these have been my side effects:  Sense of smell and taste have drastically changed.  Food doesn't taste the same anymore.  This is the most irritating because I LOVE food.  My hands shake, especially if I try to hold something.  If I do anything deliberate, they start to shake like crazy!  My mouth and skin are dry.  I can't open my jaw all the way (I know to some this really ISN'T a problem, but...), and of course the fatigue, that's constant.  I might have forgotten a couple, but those are the major players.  Not super annoying, but just annoying enough!  :)  I shouldn't complain because other people have it worse.  So I'm happy where I am.

My birthday was fun!  We went to my favorite Japanese restaurant and our friends Lenny and Stacy met us there.  It was supposed to be a surprise, but my fine-tuned, highly skilled sleuthing abilities figured it out!  Yup.  Just call me Sherlock Holmes from now on.  Thank you.

And on Saturday, Thom and I were at Kohl's because he wanted a new pair of pants and a pair of black shoes.  So I'm sitting in the shoe section waiting, and all of a sudden I hear, "Do you think they have this in my size?"  It was rather LOUD, so I looked up and who do I see?  My high school friends Christine, Charlene and Diana!  I must've sat there for about a minute with my jaw on the floor, trying to comprehend what I was seeing.  They all said in unison, "Oh my God, you shop here too?"  OK, remember the "fine-tuned, highly skilled sleuthing abilities" (see above)?  Yeah, not so much.  I was so absolutely clueless, I seriously thought they were there to shop, so after like a half an hour or so, I hug Charlene and say, "Well, I don't want to keep you guys."  Then they all burst out laughing!  Christine's crying.  They told me that they had come there to see ME!"  I was all sorts of confused.  Thom and Christine planned this ambush to surprise me for my birthday!    I was so excited and happy!  I hadn't seen Charlene in 21 years!!!!!!!!!! 
We went to the fanciest restaurant in the mall complex:  Applebee's!  LOL  I didn't care where we were!  It was SOOOOOOO awesome to see them and spend time with them.  They make me laugh until I can't laugh anymore.  Right back to high school, but with some added stories!  I wish I didn't live so far away from civilization.  It means SO much to me when people trek out to my neck of the woods, especially to see me!  I was so happy!  That was a spectacular day!

When my "fine-tuned, highly skilled sleuthing abilities" returned (on the way home), I realized that the mall is a little too far for them to actually "shop there" on a regular basis.  Hindsight is 20/20, Thom was acting weird.  He was texting a lot, but that wasn't anything out of the ordinary, and he was slithering around like a snake!  And it was the 3 of them specifically, and they told me that they wouldn't all go somewhere and not ask me.  It was all just too funny!  Wow, though, if you could see the gears turning in my head...they were so dusty, rusted, and stuck in place.  It was ugly, real ugly!  LOL

Easter is almost here!  We're going to my parent's of course.  You know what that means, right?  I can start playing World of Warcraft again!  I miss it.  Go ahead, say it, "GEEK"!  That's ok.