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.

There's no place like home

On Saturday, I went to Dana Farber for my chemo as usual.  The nurse came back with my blood results and they were unable to give me chemo that day because my white and red blood cells were very low.  The thing about this kind of chemo is that it hates bone marrow, so I run the risk of having low white blood cells (neutrophils) each time.  So I was what they called Neutropenic.  No, not Neutrogene, Neutropenic.  :)  The on-call doctor wanted to keep me in the hospital.  Just because of the fevers I was having that whole week before.  He didn't feel comfortable sending me out with no immune system.  Hey thanks doc!

I stayed at Brigham's until yesterday.  They ran every single culture they could think of, I got blasted with IV antibiotics, got MRI's and CT scans, but everything came back negative.  That's good, but I still don't know what causes these random fevers. 

Let's see, let's do a rating of the Brigham.  I might as well since I've been in many hospitals.  It'll be on a scale of 1 to 5 (IV bags)

Nurses: 4.5  They were all very nice and attentive
PCAs: 3.0  Leaves much to be desired, you ask them to do their job and they get all huffy
Room:  All single rooms because I was on a floor where they tried to minimize germ exposure.  The room was huge.
Food:  -10  This hospital had the WORST food I have every had.  I ordered a GRILLED cheese.  You know what I get?  Bread slightly toasted, a piece of cheese in the middle, served cold.  "Scrambled eggs" turned into an omelet, fake eggs.  Ahh well, as long as the medicines good, right?!

I have a follow up appointment with the doctor tomorrow and we'll see if I'll be able to get chemo.

I still don't feel "right", not that I ever did!  Hopefully every day will get better.  I'm planning on returning to work on Monday. 

Oddity/Curiosity Trip #2 - The Charles Ponzi House

 

Last week, I spent the day with my high school friends Christine and Charlene in Lexington.  I thought it would be interesting to go see some curiosities in Lexington/Concord since I was there.  Christine was all for it, so I told her about them.

The first stop was the original Charles Ponzi house.  He was the creator of the "Ponzi scheme", basically, the first pyramid scam.  An Italian immigrant (figures) living in Boston, he fine tuned this scam.  He borrowed from Peter to pay Paul.  He promised investors a 50 percent return on their money in 90 days if they purchased international postal reply coupons, which were coupons he purchased overseas for a penny and exchanged in the US for six cents.  Unfortunately, it wound up costing more to ship and exchange than they were worth here.  It worked as long as you had new investors at the bottom of the pyramid.  Short story long, he spent 7 years in jail and died penniless in Rio de Janeiro.  Investigators searched the 20 room mansion in Lexington, MA and all they found were 100 gallons of home-made Italian wine.

Butler's Pantry

While we were looking at the house, a lady came out and I went to ask her if this was the Ponzi house and if it was ok to take pictures.  I was expecting a sign or something, but there was nothing.  A few minutes later, another lady walked out and told us she was the current owner and if we would be interested in a tour.  Are you kidding?  Sure!!  I told her that her house was in a book on Curiosities in Massachusetts.  She was surprised, she never had anyone come by to see the house.  The house...err...mansion was huge, hence the name mansion!  She still had original chandeliers and the old butler pantry with a pass through.  The fancy woodwork on the ceiling and moldings were original.  It was beautiful.  She gave us copies of some pictures she had from a book.  She had original photos of Ponzi, but she couldn't remember where they were.  No kidding!  LOL Her husband made a copy of the page in my book mentioning the home.
Before we ended the tour, it so happened that the owner knows my friend's Christine's aunt and uncle and were going to see them that weekend!  What a small world!  Chris would've never had met them if we didn't get that tour and talked to that lady.  She was so friendly and open, it was so cool!

Beautiful landscaping, and some original trees and steps from 1919.  This had to be the coolest curiosity trip to date!!  I have some pictures, but their quality is horrible.

Phew, is it hot in here or is it just me?

Temperature reached 102.2.  I have an appointment with Dr. Guarnieri tomorrow morning.  Don't know what he's going to do.  Leigh has been gracious enough to drive me in.

I'm sweating, so maybe this round of fevers finally broke.  Taking temp now...101.6.  Better, but not great.

Lizz called.  They ended up getting tickets to come out here for the baptism!  I'm so excited!  I'm so happy, can't wait to see them all again.  They won't be staying long, and I don't know if I can take time off, but I will try.

Thom made me some chicken broth with orzo!  Mmm, I was hungry!

Disclaimer:  The following is religious talk.  We all have different beliefs, and thats fine. If you don't believe in any kind of God, I'm sorry if it offends.  If you don't like it, don't read my blog.  I don't want to be PC.

Today is Ash Wednesday, and of course, I didn't get my ashes.  And I was having a hard time deciding whether or not I'm going to give something up.  And if so, what could I give up?  The only thing that I do on a regular basis is play WOW.  Then, I started thinking about what else I could give up instead.  This  made me feel bad because I was taking the road most traveled.  "I can't give up WOW!  I enjoy it too much!". Made me feel worse because Jesus didn't get the choice of what he was sacrificing.  How can I not give up something I enjoy? That's a sacrifice for me.  A little one compared to what Jesus sacrificed for us. I feel this world has become Godless, and I don't want to be part of that.  Sodom and Gomorra always come to mind.  How long can we not believe without reprisal?  God is just, but don't deny Him.  You don't want Him angry.  

So, for 46 days, there will be no WOW playing for me.

  

I'm burning up

Stayed home from work yesterday and today, still battling fevers, and some nausea when I'm upright for a bit.

Thom and Jen McKenna (Dr. Silver's medical assistant, but more than that, I don't know her title) both think that the Zometa injection I got on Friday was what's causing the fevers, but this is a long time for a fever to last.  I think the lowest it's gotten was 99.7•F.

I've gone threw a shirt a night because I sweat so much, I drench them and it makes me cold.  Night sweats, fever sweats?  I just don't know.  Same thing?

I got the rest of the week off to rest and because a lot of people are sick at work, so she didn't want me exposed to all these germs.  That's very thoughtful.

Temperature reached 102.2.  I have an appointment with Dr. Guarnieri tomorrow morning.  Don't know what he's going to do.  Leigh has been gracious enough to drive me in.

I'm sweating, so maybe this round of fevers finally broke.  Taking temp now...101.6.  Better, but not great.

Lizz called.  They ended up getting tickets to come out here for the baptism!  I'm so excited!  I'm so happy, can't wait to see them all again.  They won't be staying long, and I don't know if I can take time off, but I will try.

Thom made me some chicken broth with orzo!  Mmm, I was hungry!

Today is Ash Wednesday, and of course, I didn't get my ashes.  And I was having a hard time deciding whether or not I'm going to give something up.  And if so, what could I give up?  The only thing that I do on a regular basis is play WOW.  Then, I started thinking about what else I could give up instead.  This made me feel bad because I was taking the road most traveled.  "I can't give up WOW!  I enjoy it too much!". Made me feel worse because Jesus didn't get the choice of what he was sacrificing.  How can I not give up something I enjoy? That's a sacrifice for me.  A little one compared to what Jesus sacrificed for us. Other people don't bother, but why would I want to be grouped with hedonists?  If that's the right word.  I feel this world is Godless, and I don't want to be part of that.  Sodom and Gomorra always come to mind.  How long can we not believe without reprisal?  God is just, but don't deny Him.  You don't want Him angry.  So, for 46 days, there will be no WOW playing for me.

I wish there was a way to download this into my blog.  That would be sweet.

Fever has increased to 102.1.  Dr. Silver wanted me to get a CBC done to check my neutrophils,  which are white blood cells that fight infections. If their numbers are less than 1000, I have no immune system and I should be on IV antibiotics.

The fun never stops here.  I'm still waiting on the results!!  Not sure if Dr. Silver will even read them tonight.  So now we play the waiting game.

Is my body just shutting down all at once?  My imagination is running a muck.  

Tired and cold.  That's what I'm feeling.  Oh and frustrated and angry.

First day of the new chemo regime:  Navelbine.  It's a bolus injection that takes about 10 minutes to inject, but to prevent a flare up in my upper arm (I'm told hurts), I will get injected with saline for about 45 minutes.  Luckily, I got my usual nurse Jade in here for the first time, so the nervousness is decreased because I trust her.  If this hurts a lot, we'll be considering a port.

The new setup at the Yawkey center is nice.  The chairs have heat and massage, flat screen TVs, and floor to ceiling windows, giving this place a much brighter feel to it.  I like this new setup.

I had dinner plans with my high school gals, but we needed to reschedule due to Christine having the norovirus, and she didn't want to give it to me.  So we rescheduled for the spring when everyone will hopefully be healthier.  I'm touched she was thinking of me.  Not many people would.  And I really don't need any more sickness, thank you.

48 hours

It's been 48 hours since the surgery, so I was able to remove the bandages.  Steri-strips are all that cover the 2 small incisions.  There's been a dull soreness, but no pain.

The thing that is concerning me is that I now have a fever (101.6). I've had a low grade fever since I got home.  Thom said it was too fast for an infection, and the site looks fine.  Is it one of those mysterious fevers again?   No one can figure out the cause, and it's very frustrating.  It puts my already compromised immune system under more stress.  How can my body fully fight this disease if all this other shit keeps making it weaker?  It scares me.

I've only been able to stand or sit upright for a short period of time before I start getting nauseous.  I'm lucky that I'm working from home tomorrow.  Gives me one more day to rest.

Meeting Jenn  and Stacy at the McDonald's in Spencer for lunch.  I'm so glad they're coming out this way.

I opened the windows in the bedroom to get some fresh air in, boy did it smell great!  I can't wait for winter to leave.  This has been the longest year of my life.

Do you think the fungus on my left toe is contributing to the fevers?  I'm trying to think of things.  Do I have a tooth infection that's just brimming?  WHAT IS CAUSING THESE FEVERS?!?!

D-Day

Today is surgery day.  We have to be at the Brigham by 6am.  ?!?! The surgery takes about 1.5 hours, recovery about 45 minutes.  Chemo is scheduled at 10am.  They are going to put the port into the subclavian vein, between my collar bone and my breast.  They are only going to sedate me so that they can still talk to me.  Wonder what I'll say!  Get the recorder ready!  Youtube alert!  I can expect to be sore of course. And I'm a little bit nervous, but I'm in  good, capable hands.

I'm still a bit skeeved out by the whole thing, but this better for me in the long run.  Shudder.

Heard from Lizz that they will be unable to fly here in June because airline tickets have skyrocketed.  They can't afford it.  I was so looking forward to seeing them again.  Of course my mom's flying there for a week.  I can't go because I am going to Texas in May for Jim & Michelle's wedding.  I can't take another week off.  I'm bumming.  Logan has changed so much since I last saw him, and Brianna is turning into such a beautiful girl, not that she wasn't always beautiful.  

Last night I went out shopping with Libby and then we met Bri and Melissa for dinner at Plaza Azteca, my new favorite Mexican restaurant.  We had a great time!  There was a live Mariachi band, and I told them it was my birthday.  They serenaded me with both the English and Spanish version of "Happy Birthday", plus a couple of other songs.  I loved it!  Always wanted to hear a Mariachi band!  It was pretty cool!  Melissa tipped them because the rest of us didn't have any cash.  

AND I pulled yet another muscle or struck a nerve because somehow, I tweaked my back and it's killing me.  It hurt to even lift my glass.  Thom asked me what I did, and I told him that I, um, walked.  WTF?!  It's just one thing after another after another.  I keep saying I have some bad juju going on, because so far, this year has been riddled with sickness, a fractured rib, infections, sciatica and pulled muscles.  It's bordering on the insane and unbelievable.  When can I catch a break?  I'm sick and tired of being sick and tired.  But I must push forward.

D-Day cont.

Had to be at the Brigham by 6 am, but of course, we got behind some slow ass bitch getting to the pike.  Really?!  It's 5 in the morning, you must have to be somewhere, so speed the fuck up!!  We were a half hour late.  But it was ok.  Got my blood work done and brought to pre- op.  My nurse, Laurel, has the same birthday as me!  We're both fools!  They explained the whole procedure and I even got to see and feel the "super port" as they call it!  

This is my first step to becoming bionic!! LOL

Once in the OR, I got moved to their table and it felt like a temperpedic, it conformed to me.  Nice warm blankets and I was very comfortable.  Then I got my cocktail of "twilight" drugs to put me into a semi-conscious state.  I liked that!  It looked like the lights on the ceiling were moving.  Ahhh...so relaxed.  Don't remember a thing!  But the procedure went perfect, with no problems.  This is going to make things so much easier for me, much less painful.

Went to recovery for about 45 min or so, and my nurse Bill was awesome!  

Now it was chemo time.  Saw LaTasha after so long, it was great to see her, that girl just cracks me up!  Always brings a smile to my face!  Love her!  I had my bestest nurse, Jade.  Chemo went flawlessly and most important, pain free!  My left arm STILL hurts from last week's chemo.  

Pain meds started to wear off and that's when I started to feel a little soreness and a lot of tenderness.  I felt like I got a piece of furniture slammed into my clavicle area.  Ouchie.  Bandages need to stay on for 48 hours.  Can't get it wet.  It's such a great thing I don't have to work on Monday in the office, gives me another day to chill.  I brought some easy work home.  Thank you to my boss for being the most awesomeness boss I've ever had. 

We got home a little bit past 6pm, more than thirteen hours later.  It's been a LOOOONG day.  I'm in bed and I took some pain killers and now I'm getting drowsy.  The pain has ebbed so that's a blessing.

And Thom, you are amazing!  I love you so much and you take care of me so well.  You're thoughtful and considerate and it means the world to me!  Muah!

Chemo went better than I thought.  Jade put the IV in my hand.  It did burn my upper arm around the elbow, but not as bad as I feared.  We discussed me getting a port again, and she brought over a woman, Barbara, who has a port, to answer my questions.  I thought the port would have lines coming out of it, but there are no lines.  It's right under the skin and they only access it when they need to.  That made my decision right there.  I thought there would be tubes.  I'm calling Dr. Silver tomorrow to plan the surgery.  It hurts the most when I get IVS put in.  Jade told me that my veins have recovered, but that they are pretty scarred up.  No wonder it hurts!

First day of the new chemo regime:  Navelbine.  It's a bolus injection that takes about 10 minutes to inject, but to prevent a flare up in my upper arm (I'm told hurts), I will get injected with saline for about 45 minutes.  Luckily, I got my usual nurse Jade in here for the first time, so the nervousness is decreased because I trust her.  If this hurts a lot, we'll be considering a port.

The new setup at the Yawkey center is nice.  The chairs have heat and massage, flat screen TVs, and floor to ceiling windows, giving this place a much brighter feel to it.  I like this new setup.

I had dinner plans with my high school gals, but we needed to reschedule due to Christine having the norovirus, and she didn't want to give it to me.  So we rescheduled for the spring when everyone will hopefully be healthier.  I'm touched she was thinking of me.  Not many people would.  And I really don't need any more sickness, thank you.

Snap...crackle...pop

Hello!

Have you all been enjoying the winter??  I know I haven't!  Like I said in my last post, I've been sick with something since after radiation, I guess it just wiped out my immune system.  An update on that:  The sciatica is gone, thank God, the sinus infection has cleared up, I've relatively stopped coughing, only a few here and there. 

Went to see the oncologist yesterday.  I wouldn't say it's good news, but it's not terrible news I guess.  My cancer markers have been slowly creeping up.  They went down right after radiation, but they've been increasing none the less.  He decided to stop the Xeloda, the chemo in pill form.  I've been on that for about 5 months, give or take.  That's disappointing because that's another treatment that's now crossed off the list.  But it's also a relief to me because I wasn't sure if it was working, and it was stressing me out to take pills after I ate, or 30 minutes after I ate.  Sometimes I would forget until 1 hour or 2 after I ate.  I prefer a scheduled, for sure it's working, chemo.  I hate depending on myself.

So the new plan is to start a new IV chemo, Navelbine, on Feb. 26th.  We are going to do the chemo on Saturdays like before so it doesn't totally screw our working schedules up.  Navelbine is pretty well tolerated, my hair shouldn't fall out (any more than it already has!), no real threat of nausea or vomiting, so that's good.  The thing with Navelbine (there's always something though) is that if you have it given through your arm veins, it burns a lot.  We discussed getting a port surgically implanted.  The thought of that makes my queasy, so I compromised with him.  I'll try the first treatment through and IV and see how I tolerate it.  If it hurts too much, we are going to get a port implanted.  I get knocked out for this and they put the port into the subclavian vein (above the collar bone).  There are benefits to it, I guess.  They don't have to poke me every time.  I am just not sure how I'll feel about it.  I'll be able to see it and feel it right below the skin.  I don't know.  We'll see how it goes.

Got an MRI of my head again.  I got to see the images this time, so there's proof that I have a brain!  I saw the spots that we are targeting.  They are like light gray spots.  We counted about 5 or 6.  They are still there, and I was worried that the radiation didn't help, but he said not necessarily.  The spots can be dead, but they will still remain there, it just doesn't disappear.  So I'm hoping that they are dead.  My numbness in my chin had gone away after radiation, but a few days ago, I've noticed that an area on my lower lip got numb again.  The radiation oncologist told me that the numbness might not go away.  I was just bummed because it had gone away, but then came back.  They don't seem that concerned about it.

I think I mentioned that I have been having severe pain (9-10 out of 10)  in my back, right side.  Sitting and standing make it worse as does coughing.  The only relief I get is when I am horizontal!  Had to go to the ER last Monday because it was so bad and I thought it was kidney stones.  There were kidney stones floating around, but nothing to be causing this pain.  They concluded it was a pulled muscle.  I didn't believe them.  I've had pulled muscles and it never hurt this bad.  So I told my oncologist yesterday and he determined it was a fractured rib.  He said that that particular site on my rib has more disease on it, so it makes it very fragile and easy to break.  I know I coughed and I heard a pop, so it makes sense.  There's not much you can do for a broken rib except wait until it heals.  I have vicodin, but I can only take that when I'm home.  The worst pain is when I'm at work.  Great.

On the way home from my parent's, it started to thunder and lightening.  We decided to stop at the dock near the lake and watch the lightening display.  Wow, it was amazing.  Saw some pretty awesome strikes, lit up the whole sky to daytime.  Now it's incredibly windy.  We're not in Kansas anymore, Toto!

I decided that I must have some bad juju hanging around me.  My brother-in-law asked me how much bad luck can one person have?  Well, I was never one to have GOOD luck, so I'm not really surprised.  I can say that I am LUCKY in many ways.  But I do have a lot of not so good luck.  Maybe if I spin counter clockwise while eating a carrot and singing "Sweet Home Alabama", I might get rid of it?  LOL
If anyone has any ideas, let me know. Your opinions are always welcome.  

I do have to say that this bout of pain and sickness scared the hell out of me.  I try my damnedest to not think about anything but today, but it made me terrified of what MAY come.  That's all I'm really going to say about that.  LOL, I sounded like Forrest Gump! 

Dana Farber has opened up a new building, connected to the old building, called the Yawkey Center.  It's been open for 3 weeks, and they still have a lot of kinks to work out!  We were shuffled to all the wrong places, then reshuffled.  The place is huge.  There are things that I don't like about it.  For instance, Laboratory Services used to be small, personable, and only Breast Cancer patients.  Now they grouped all types of cancer, and it's a large room, lots more people, longer waiting and very cold and impersonal.  I feel like cattle being herded.  They say it's more efficient, but look at what you lost!  I have 2 favorite phlebotomists that I only use.  Now, I hardly saw them.  I used to be able to see them and talk to them.  That's what I love about Dana Farber.  They are not "institutional", they focused on individual patients.  And the waiting rooms to see the doctors?  They are huge!  They have to yell across the room to call your name.  I feel like such a small fish.  And the ironic thing??  It was designed by a patient committee!!!!  Really!?  What kind of patients did they use?!  All in the name of saving money and making things "efficient".  Yeah, how'd that work for ya?!  I plan on complaining to someone, via email or phone call.

I'm going to leave on a good note!  I visited my parents and they made me homemade tiramisu!!  Love that stuff.  Mmm.

Till next time!  Hopefully I will have happier news!

2011 So far...

With the exception of the first 2 weeks of January, this year hasn't gotten off to a great start for me.  I felt fine during radiation, but once it was over, everything hit me at once.  My hair fell out very quickly, so I had Thom shave my head.  Then sciatica came along, and that hurts.  Then I pull a muscle in my shoulder from coughing.  Then I get a sinus infection.  Now I have a pain in my back, I'm actually not sure if it's kidney related or if I pulled more muscles coughing.  Doctor put me on a course of antibiotics, but  it did not clear up the infection.  So now I'm on round two of antibiotics.

To say I'm exhausted is an understatement.  It's a bit depressing.  Trying to take one day at a time.  This has been a test of my strength.  Not feeling very strong right now. 

I also wore my wig for the first time at work today.  I was surprised at how self-conscious and ridiculous I felt.  I didn't make it through the day with it on.  I feel much better wearing my hats and scarves.  I felt like an impostor and I really felt I looked like a clown.  People were nice and told me I look good, but I didn't feel good, and that's the only opinion I went with. 

Sorry if this sounds like a pity party, oh woe is me.  This is what's been going on.

I'm back on the pill chemo and I see the doctor on Feb. 18th.

I wish I had something more exciting to write about.  Oh!  I finally took down my Christmas decorations!  LOL

A pain in the ass, literally!

Ok, so now radiation is done, I'm off chemo for a couple of weeks, you think things would calm down, right?  Wrong.

I guess the cumulative effects have hit me...all at once.  My hair decided to fall out in like 1 day, it was so not nice, so Thom offered to shave my head.  After the hair was mostly gone, it was apparent that I had a reverse mohawk!  It was bald in the middle, with some occasional patches elsewhere.  The hair is very prickly, so it stabs my head while I'm trying to lay down to sleep.  Ah, sleep, the ever elusive state.  I'm exhausted, but I can't sleep. 

It's impossible to hide that fact that I have cancer now.  With all my hair gone, it's totally obvious something's going on.  I have had to tell other people at work the story because I get double takes.  They don't SAY anything, but you know what they're thinking.  They are just not sure if they should ask.  I understand, I mean, what do you say?  "Hey Em, how are you?  Say, what's up with the hair?"  But I found that the more silent people are, the more weirded out I get.  Strangers in the cafeteria look over at me, and smile.  Never happened before.  I just blended in with the crowd.  Happy Emily.  But now?  I feel I have a spotlight on me and everyone is looking.  It's probably just me, but that's how I feel.  Most people are too self absorbed to even notice anyone besides themselves.  I told some people I decided to shave my head ala Britney Spears, and they just laugh.  But I have an eye patch, and I'm going to wear it tomorrow, ala Pirate.  A workmate has a fake raven on her desk and I will borrow that and put it on my shoulder.  I will even talk to it throughout the day.  It's not a parrot, but who cares?  It's Pirates ala Edgar Allen Poe!  Bet he never wrote anything about that!  I'm going to have fun with this, why not?!

I had begun to have some hip pain, so the doctor did some Xrays.  It looked ok, no weakening in the joint or bone, but he noticed I had a bone cyst.  I have to look that up because I don't know how you can get a cyst on your bone?  That seems to be putting some pressure on my L5 vertabrae, which is now causing sciatic pain.  If you're never experienced sciatica (consider yourself lucky), you get a shooting pain in your butt, down to your knee.  You are not comfortable sitting, laying down is no fun either, and it hurts to walk.  So standing in one spot is ok, until you get tired.  So now, when I try to sleep, I get shooting pains.  Oh, and to make it all better, when I lay down, I cough, a lot.  So I pulled a musce in my right shoulder.  When it rains it pours.  The pain is constant, the only slight relief is Tylenol.  There's really no real "cure" for it, just have to ride it out.  I got suggestions, like heat, which helps a little.  If I start to get radiating back pain, the doctor said it will be time to image it with an MRI.  I really should be glowing right now with all the radiation I have been exposed to.  Maybe I can make a superhero out of that, kind of like Rudolph, although he wasn't a superhero, he had a purpose.  The power to glow, some superpower!  LOL

Ok, I'm done complaining about my pain. 

Now on to complaining about other things!  I've had just about enough of the snow.  The snow, bitter cold, and more snow.  It's really sucking wind.  It's supposed to snow again tomorrow night.  I equate it to getting stuck at every red light, you get into a rhythm, and you hit every single red light.  We're in a snow rhythm.  We need to get out of it...someone blow a red light please!  :)  Just kidding!

I think people are panicking in the snow now.  The snow wasn't even that bad today (compared to the storms last Tuesday and Friday), but traffic was just as bad, if not worse, than those days.  I don't understand.  You have extremes:  people who think they're indestructible and don't give a shit about the other people on the road, and do 80 mph; then there are the insanely cautious, they go 20 mph on the highway.  I understand that they don't want to get into an accident, but sometimes, being like that, causes them.  It's New England.  It sucks, we get snow.  Get used to it.  Don't drive like an idiot, be smart.  I plan on staying home Thursday if it's really bad.  One less car on the road.  And for those assholes who drive like maniacs, what job is SO important that you need to speed to get there?  Unless you're a doctor and there's an emergency, ok, but I doubt there are that many doctors on the road.  And if your boss expects you to be there no matter what, reconsider your chosen place of employment.  Nothing is worth risking your life (AND the lives of others) to drive like a shithead.  Unless it's an emergency.  There's always an exception.  But again, I doubt there are that many emergencies on the road.  It took Thom about 3 hours to get to work this morning.  That's insane!  He could've been in Maine by then and probably having more fun.

OK, off my soapbox.  Wow, lots of complaining today!  I must be cranky!  :)

Let's see, good news?  My nephew Logan is growing so much!  He already looks so different!  I should see them in the spring or summer, not quite sure when yet.

Thom has been spectacular through all of this.  He drove me to radiation every day without a complaint, even though it was out of his way to drive me back to work afterwards, and then drive back to the Boston area.  He's been taking good care of me and I thank God everyday for him.  I love you so much.

The upstairs bathroom is completed now!  We just need to get a cabinet or something to store the towels etc. in because we lost the closet.  But I love it!  Much brighter!  More decorating for me!  Yay!

I think that's about it.  My New Year's resolution is to update this blog more often!  I just didn't want it to be a pressure thing, you know?  I write when the mood strikes me.  But so much happens that I don't write about, and I want to change that.  I feel connected to you all via this, so it's also good for me.

Thank you John D for your offer of assistance!  I may call on you sometime.  It's much appreciated.

Oh, I forgot to mention:  I received a box in the mail last week, and it was a brand new pair of shoes that I looked at in Dallas.   My wonderful future sister-in-law got them for me!  She has been showering me with gifts.  It's actually very nice and sweet!  Thank you Michelle!!  They are sexy!!  :)

All right folks, Thom just got home, so it's time for me to go.  Thanks again for sticking by me on this blog. 

Peace out!

Brain Fry

Hello!  I made it through my first week of radiation.  It was a long week.  I have a whole head radiation treatment everyday for 2 weeks (not including the weekends, thank God).  I have to go into Boston, which makes it even more tiring.  It's funny, I'm at work by 5am and it's fine, but to get to Boston by 8 is hell!  Go figure.

The side effects I've had is extreme fatigue.  I thought I was tired before.  But to piss me off, I've been unable to get a full night's sleep this weekend.  Thank God for naps. 

I want to thank everyone who's offered to help.  Thank you Libby for driving me in on Friday.  It means more than you know.  Leigh, I'll be calling you today to see if you'll drive me one day.  You guys are the best.  It touches my heart to know that you guys are out there.  I love you.

Went to Dallas for the New Year and I met Captain Mayo's fiancee, Michelle.  He is now known as the "Wheels of Justice" because he is going to law school and his bookbag has wheels.  Sucks to be old.  LOL  Michelle is one of the most giving, interesting and wonderful people I have ever met.  She has a big heart and I love her for that.  I got to talk to her about the cancer and she offered me the opportunity to just let go and tell her my deepest fears.  We had a good cry and I felt a weight lifted off of me.  I had the BEST time in Dallas.  Ever since visiting Jim in Corpus Christi, I have fallen in love with Texas.  They tell me the summers there are brutal, but I still would like to move there. 

On the plane on the way there, I sat next to a 16 year old boy who was on his way home.  He was so nice, respectful and funny, I was amazed.  A 16 year old who is not a tool?  Wow.  Blew my mind.  I came to find out that the people in Texas are like that, normally.  I met some of Michelle's friends, and they welcomed me with open arms.  I felt like I knew them for years instead of minutes.  Such a contrast to people here in the northwest.  We look down, don't offer any help, are selfish and mean (not everyone though).  Total opposite there.  It was eye-opening and wonderful.  I took pictures of these people who treated me so special so that I may remember them.  I will be seeing most of them at their wedding in May, so I'm looking forward to that.  So yes, I'm going back to Texas in May.  Can't wait.

It seems that I have the flying fear under control now.  What, with both the trip to Chicago and to Texas in the same month, it's like old hat now.  I am so grateful for that because now my world has opened up even more and I can travel like I've always wanted to do.

I almost forgot...on the flight down to Texas, we had to make an emergency landing!  It was crazy!  I have never landed in an airplane so fast before.  There was a woman who was in a diabetic coma in first class.  We diverted to the Memphis airport.  The captain kept us all informed on what was going on, so it made it a little less unnerving.  It was like a roller coaster ride, or at least, what I picture a roller coaster ride to feel like.  That lady is ok.

My trip to Chicago was wonderful also.  I got to meet my new nephew Logan, and spend some time with Brianna and my sister.  It was sooo cold there, we couldn't really go out much.  It was bloody frigid.  Chicago is nice, but I'm not sure I could ever live there.  We almost did though.  I hate the cold.  I hate being cold.  Blah.

I have so much to update.  Again, I apologize for neglecting this blog.  I get a lot of slack for it too!  :)

Christmas was AWESOME!  Santa was all too generous this year.  I got an iPad, Gummi Savers (a tradition), and a bunch of little things, but the best presents off all were found in a blue box wrapped with a white ribbon.  Yes, Tiffany!  Not only  one, but two boxes!  To say I was flabbergasted would be an understatement.  I told Santa not to bring me anything because the iPad was enough, but he never listens.  I got a beautiful necklace and a matching bracelet.  I love it love it love it!  Thank you Santa, I love you more than you will ever know or that I can tell you.  Muah!  I was spoiled.

Thom surprised me even more by redoing the upstairs bathroom while I was in Chicago!!  He also moved the washer/dryer upstairs, which I think is the best thing since sliced bread!  It's so awesome to have the laundry room right outside the bedroom!  I don't have to lug heavy baskets up 2 flights of stairs.  The bathroom looks spectacular!  I love it!

Phew, that's a lot of stuff. 

Work has been SO understanding and kind to me through all of this.  I'm so lucky to be working there.  I love my job.

So, I said goodbye to 2010 and welcomed 2011 with open arms!  It has started out fine!  A new chapter is being written...