Bad news

Hey everybody,

It's taken me a week to be able to write this blog.  Just thinking about what I had to write had me bursting into tears.  Does anyone ever run out of tears?  I thought for sure I would.

A week ago Wednesday, I got the results of my CT scan and MRI of my head.  If you recall, I've been having trouble with joint pain and fevers.  And I also got a lovely new symptom:  a numb chin on the right side only.

My primary care doctor ran a battery of blood tests to test for Lyme, Lupas, Rheumatoid Arthritis and other things and they all came back negative of course.  It couldn't be something we could easily treat.  So that only left the scans from my oncologist as a possible explanation. 

It seems that the cancer has progressed further in my bones (causing the joint pain), and the cancer got into my cerebral spinal fluid (causing the fevers).  The MRI scan of my head showed two spots, which means it made it to my brain.  My liver is still clear. 

I had to have the doctor call Thom to tell him the results because I wasn't sure how much of it I was taking in.  I can sit here now and type this as if I'm talking about the weather, but this past week has been hell for me.  This bit of news hit especially hard because I thought I was doing so damn good.  My counts were down, I was feeling good, so there was no reason to scan me before this.  But once I told him about my numb chin, he got concerned.  He's heard that symptom before.

If I let myself think about it, I get panicked.  What does this mean for me?!  How can it progress so fast??  How much time do I have??  Can't I catch a friggin break??  Thoughts flying around in my head, can't shut them off.  This really really sucks.

And telling my mom was the hardest thing I had to do.  I so want to be able to call her and tell her some GOOD news.  So much for the weather thing, I'm now crying.

My doctor took me off my current chemo treatment of Avastin and Taxol and has put me on a new med:  Xeloda.  It's a pill, so I don't have to go into Boston every week.  I take 3 pills in the am and 3 in the pm for 2 weeks, and then I don't take any pills for 1 week.  After 2 cycles of this (6 weeks), he's going to rescan me and see where we are.  From what he told me, the Taxol/Avastin combo did not cross into the cerebral spinal fluid, but this pill does, so it "should" get to the tumors in my head.  If these pills don't work, we're looking at radiation of my skull.  Great.  You know the first thing I thought of when I heard radiation?  My hair will not grow back in those spots and I'll have bald spots if my hair does grows back. Kind of vain, huh?

The main side effect from the Xeloda pills is a weird one.  The thick skin on my palms and heels of my feet get red, painful and irritated.  I bought a pair of Crocs in anticipation of my feet hurting and also because of my toe.  Oh yes, my toe.  That's another story.

Be warned, this next part is disgusting.

The big toe on my right foot got infected and was oozing, so I went to see a podiatrist.  He poked around and recreated the oozing, so he told me that I have an infection under the nail.  The nail is acting as a lid, keeping the bacteria contained, so he said that we had to remove the nail.

The whole thought of it was making me ill, but we had to do it.

He started numbing up my toe and while he was giving me the anesthetic, I started to get nauseous and light-headed and feeling like I was going to faint.  He stopped and let me rest, gave me some crackers and soda, and told me when I'm ready we'll continue.  Took about 25 minutes, but I felt better and we carried on.  This time, my toe was mostly numb, so I didn't feel the needle.  I refused to watch because I knew I would get nauseous again.  He cleaned it all up and told me that the infection was only superficial, and once he got the nail off, it was all clean. 

When I tell you this hurt like a son of a bitch, it did.  I've been through some painful stuff (like kidney stones), and this was by far more painful.  Had to change the bandages, and it would stick to my nail and I would have to pull it off and it made me see stars.  I've finally crossed that bridge and it no longer sticks to the nail.  Thank goodness.  So anyways, the crocs are comfortable because they don't constrict my feet.  They are not the prettiest things in the world, but they sure are comfortable.

Thom and my anniversary is coming up next week and for our anniversary, Thom made one of my wishes come true.  He got me a Penguin encounter at the Mystic Aquarium in Connecticut.  So on Halloween day, I get to spend some time with some penguins and hopefully hold one.  I'm very excited about this.  If you all don't know, I have this fascination and love for penguins.  One of the things on my Bucket, er "To Do" list is to swim with penguins.  So I'll be able to cross that off!  I'm hoping to get lots of pics, so I'll post them as soon as I can.  Thank you sooo much Thom, I love you doesn't even begin to express how I feel about you.  And I'll get to share the experience with him, so that's just awesome!

A lot of people have asked if there's anything that they can do.  Thank you.  Right now I'm ok, but maybe in the future, I may need help with meals so that Thom doesn't have to cook all the time.  Any maybe some chores.  But that's not right now.  You can all pray for me and send good vibes my way.  I think there's a saying, "If God led you to it, He will see you through it."  Or something along those lines. 

Death has been on my mind a lot lately.  Now, please don't think this means I'm giving up or anything, it's just thoughts that go through my mind.  It's a pretty scary thought.  I won't worry you all with my thoughts, but just that I have been having them.

First Massachusetts Oddity Trip

On September 25th, I went on a Massachusetts Oddity Trip with my friend Libby. She has a book of all these curious and weird places throughout MA. She has been doing one in Ohio and I loved the idea. This was my first! It was awesome! I get to see things that I would never have heard about. There's so much out there!

Our first stop was to Lee, MA (The Berkshires), where they so happened to be celebrating Founder's Day. There was a parade, food, people selling their crafts. It was a hoot!

 

I was telling Libby that this reminded me of The Vampire Diaries, but with no Vampires.

 

Curiosity #1: The First Congregational Church in Lee. It's claim to fame is that it is the tallest building in the county made of timber frame construction. Think Jenga, but hollow.... and just in the steeple.


A full shot of the church.  Oh, and by the way, that 4-sided clock you see below the steeple needs to be hand-wound every 7 days.





Each Oddity trip needs to be properly documented with a photo in front of said Oddity.



Hmm, what could be upstairs??


 

This was me on the way back down from sneaking upstairs.




This was from the Choir section, just gives you a perspective of the size.


 

This is my Phantom of the Opera impersonation.




These pews still have the original horsehair in them.

 

This is what's left of the timber used in the steeple.

      


This church first started out as a meeting house.  Above is it's evolvement from meeting place to church.



Don't be fooled, those are not real colums, it's 2 dimensional paintings.  Amazing!

2 dimensional.  Also, there was a major renovation project where local High School students were given erasers and had to erase every inch of these paintings.  They still have the eraser nubs.

Oddity #2: Chesterwood, Stockbridge, MA. The summer residence of sculpter Daniel Chester French, most noted for the statue of Lincoln seated inside the Lincoln Memorial.  I'm not sure why this is considered an oddity, but it's in the book, so hey what the heck?!



Daniel Chester French's Mansion, the locals like to refer to it as the "Residence"


 

 

Documenting the oddity.

My turn.

There were a series of modern sculptures throughout the grounds, which of course we had fun with. Following are some highlights. This one is called "Susan".

You can pick your friends, you can pick your nose...

"Calling in the bees"

Freaky head guy.  Known as "Stroller"

Libby asks, "Does this statue make me look fat?!"  No, not at all...

"Geo Eye"

"Erzulie for Haiti"

This fountain was part of his Italian piazza in the back of the house.  He entertained guests out there because he couldn't fit them in his "Residence"

"4 pm"  made out of concrete

 

"Bathing Beauty"

Me making "A Little Night Music"



"Blue Muse"  I can't imagine this sculpture inspiring anyone.  But that's just me.



Randomly placed traveler's wish pile.

"Gabriel"  The artist chose a dead tree in Chesterwood's forest and removed a section in the uppermost portion of the trunk, subsequently slicing this section into boards.  These rough-sawn boards were then reinserted in a radial pattern, resulting in the tree assuming the character of a winged personage.

"Trespassers" The artist took the common "No Trespassing" sign to literally fabricate the skin of the human form.  Our skin is the boundary of our body, separating and protecting us from the outside world.  These figures are stating their own autonomy, but they are also acting as a silent army, protecting a boundary of their own making.  Are they warning trespassers, or are they themselves trespassers in the natural world.  Wow, that's pretty deep.

This cherub was not part of the exhibit, it just happened to be there.

"Shitheads", umm, I mean "Shirtheads"

There are no words....

September 11th

I can hardly believe that it's been 9 years since that day, a day that is still so sharp in my memory.

I was at work, randomizing groups of rats for a study that was running later that day. I was with my friend Shannon, in one of the supervisor's offices. He came in and told us that a plane had flown into the WTC. I remember thinking that it had to have been some kind of accident. Then, news of the second plane hitting the other tower spread. It now became horrifyingly real. What the hell was going on? And not too soon after that, we heard that another plane hit the pentagon. What was happening?? Now I was thinking, will this ever end? How many more planes? Well, one more plane, this time in a field. My heart was in my stomach. How many more?? OH MY GOD, what was happening?!?!? Work ceased. We were all just standing around, not knowing what to do, what to say. We didn't have any TV's, so we were all on the internet. Those pictures will never leave my memory. When I got home, I sat in front of the TV for the rest of the day. I was sick to my stomach. Why would anyone do this? HOW could anyone do this?

Those poor people, their poor families! God bless them, God bless those brave men and women who went to Ground Zero and helped out. These people are now suffering from all sorts of illnesses. Toxic fumes. Unimaginable sites. How can one recover from these? How can we all recover? We are all still recovering. It's just all so unfathomable. There are just no words.

And now they want to build a mosque near Ground Zero? Really? Do you have to build it RIGHT there? Isn't New York big enough for you to find somewhere else? Must you rub salt in a wound that will never close? I am all for religious freedom, but their location is in poor taste. They can build their temple, just SOMEWHERE else. It's disrespectful.

That is all.

To change to subject to something happier...Thom and I went to see the Captains from the Deadliest Catch, as you all know is my favorite show. It was Captain Sig and Jonathan and Andy Hillstrand. I couldn't believe that I was seeing them in person! I was so happy. I tried to take pictures, but the quality didn't come out too good, the battery died in the camera, and it was dark. I have a couple that I will post as soon as I download them from the camera to my computer.

They were so funny! They are so down to earth, just regular guys doing their jobs. That's why so many people like the show and them. They don't pull any punches, what you see is what you get. I wished I was closer, I wanted to reach out and shake their hands. Wanted to say Thank you. Thank you for helping me through chemo sessions. I watch the show when I'm at Dana-Farber. It's a comfort thing. I would love to meet them. They were so funny! At the end, they got 2 volunteers to put on the survival suits in under 4 minutes. That's a drill they have to do before they set out to sea.

I can cross that off my list of Things I want to Do. You know, my bucket list...but I'm not allowed to call it that! :)

What a great night! There are just so many fans out there, it's unbelievable.

Next up, in November, is meeting Buddy from the Cake Boss. I actually have a "meet and greet" with him. Can we make it a "meet and eat"?!?! Hahaha.

This afternoon, Thom and I have a golf tournament to attend. It's a fundraising activity for my friend Libby who does the Avon walk for cancer every year. I don't golf, but I'll be attending the banquet. I'll drive the golf cart around, I like doing that! But no one trusts me to do that, for some reason...

Still have stuff to say!

I've been working on this blog for awhile, things keep seem to happen. I ended up in the hospital again for a fever. Two weeks ago, after treatment, I developed a fever. Remembering what happened last time (vomiting, nausea and dehydration), I wanted to nip it in the bud before it got out of hand. Called my oncologist and he told me to go to the ER. I did and they kept me overnight. They can't seem to discover what is causing it. The nurses remembered me.

Had treatment yesterday, and I got another fever. I took some tylenol and called it a day. We'll have to visit this when I see Dr. Silver next time.

Thom and I went to Maine last weekend. My sister-in-law has a place in Normway, ME (or Otisfield, ME). The weather was absolutely fantastic. Every other time we had gone up there, it rained. Mary said that if it rained this time, we were no longer invited! LOL We had tons of fun, we went horseback riding, went shopping and just enjoyed the weather. The dogs absolutely love it up there. They roam free and go in and out of the water all day. It's so nice to see them just loving life.

Yesterday was the 20th anniversary of me and Thom's first date. I can't believe it's been 20 years!! I've known him more than half my life. Time has gone by so fast. I can't remember what life was like before him. Well, I can, but it wasn't as great. He's made me so happy, I love life with him. I love telling people how long we've been together, I love their amazement. Yes, I was lucky enough to meet my mate, my soulmate, my best friend. I'm grateful every day for him.

Thom has been renovating the living room. He painted the walls, removed the carpet and is putting down a hardwood floor. It looks great! The walls are a nice deep green, with white trim. It was beige on beige before, it actually looked yellowish when the white trim covered it. I'm very excited about it. Gives me another room to decorate!!

I signed up for a stained glass class! I'm very psyched about this. I've been looking for stained glass for the sunroom because there is a nice large window in there. Unfortunately, stained glass is in it's very nature, Victorian. My house is country. I designed a panel that has a more country-ish feel to it. The room's theme is stars and sheep. Looking forward to this.

I'm driving now, and I feel like a whole new world has opened up. I'm able to go out after work, and just able to do anything I want. I'm so happy. I've been missing so much. But I won't dwell on that. I'm only looking forward and what I'm able to do now.

This is a very long blog. I've been neglectful. Thank you for sticking with me.

Breaking the Silence

Wow, my last post was in June. I apologize for being so quiet. Life has been status quo, so not much has been happening, other than work, eating and sleeping. Boring, I know.

Speaking of work, I am enjoying it very much! One day, I was up at 3am, and I couldn't get back to sleep. I decided to go into work. Why not? I had nothing else to do...sleep was being elusive. So I showed up at work at 5am. Nobody was there, except for the security guard (who INSISTS on calling me Ma'am, I don't like it, don't like it one bit!!!) That day, I got SO much work done because there were no distractions! I saw the sunrise...I hadn't seen that in years! I was hooked. Now I have to go in for 4:30am. I LOVE it!! I'm by myself, and I get tons done. Most of all, I get to see the sunrise everyday. I never realized how beautiful a sunrise is. The sky starts to turn all sorts of colors; reds, purples, oranges, it's amazing! Only one other analyst comes in early: at 5am. But she's in the lab the whole day, so she's no bother. She came into my office area Friday morning and said, "Have you seen the sunrise, it's awfully beautiful this morning!" I looked out and the sun was a large dark orange ball. It had just gotten over the horizon. It's just breathtaking. We watched the sun for a few minutes then went back to work. People think I'm nuts (what else is new?!) for showing up to work so early, but the benefits way outweigh the negatives. 1) There is NO traffic, I get to work in record time. You know me, I HATE traffic, puts me right into a panic. 2) I get a front row parking spot (prime real estate!) 3) I get tons of work done (My boss and her manager are wicked impressed with my work, my boss wrote me this wonderful email.) They like me! They really really like me! So hire me as a permanent employee! This contractor stuff is for the birds. And 4) I get to go home early! This is BY far the best benefit. I get home around 2-2:30, and I have the rest of the afternoon to do...whatever! I can run errands, etc. This is what makes me very happy. Getting home at 6 or 7, we had just enough time to cook, eat, and then go to bed. Doing that everyday is depressing to me. So this is awesome for me! I can't tell you how happy it makes me!
This is the most I've talked about work. Getting burned before, I'm very cautious about what I write now. I DETEST feeling censored, but people seem to have so much time on their hands, that they feel it's their duty to stick their noses into everyone else's business. Those kind of people are pathetic and make me sick. Worry about YOU. Who do you think you are? Grrr, I could go on and on about this. I see it all the time, people just feeling it's their BUSINESS to watch everyone else. GAH!

OK, enough about that, I don't feel like getting all bent out of shape at 7:30 in the morning! LOL

We're going into Boston today for treatment. I saw the doctor on the 6th of this month. He's been keeping a close eye on my tumor markers and although they are still LOW (compared to when I first started treatment), they are creeping up slowly. We decided to stay the course for another couple of months and then re-evaluate again. I see him again on the 8th of October. He may do some scans then. But he's so impressed with my progress, we want to stay on this course of treatment as long as possible. I don't have any problems with this chemo, so I'm happy too.

Healthwise, I've been good. I have developed this chronic dry cough that is so strong and disruptive. It wakes me up at night; I just start coughing and I can't stop for like 5 minutes. It gets so overpowering that I start to gag. It alarms people at work. I take cough medicine, and for the most part it works, but sometimes it just doesn't. It's worse at night (of course, while I'm trying to sleep). I try to reposition and that helps sometimes, but not often.

I told one of the nurses about this cough (as well as the doctor). Come to find out that one of the drugs I take, Avastin, is known to cause a chronic, dry cough. It wasn't one of the original side effects of the drug, but the nurses are hearing more and more patients complaining about this kind of cough. It made me feel a little bit better that it wasn't just me, but it's still disruptive.

Speaking of Avastin, it's been in the news lately. The claims that the company that makes it
seem to be untrue. They stated that it slows tumor growth for 5 months. It's been found to only slow it down for 1 or 2 months. The FDA is thinking about rescinding their approval of this drug for breast cancer use. I guess that Avastin made the fast track to FDA approval, and there were not enough studies done on it. I don't know much about that, all I know is that Avastin, in conjunction with the Taxol, is helping me very much. If the FDA rescinds their approval, insurance companies will stop covering it for breast cancer use. How many people does it help? That should be looked at. I don't know if it does anything for me, maybe it's all the Taxol...but why mess with something that's working?? I'm keeping a close eye on this talk.

Also come to find out that the company I work for manufactures one of the hormone drugs I used to be on. How do you like that?! I think it's awesome!

Doctor's Visit

Saw the doctor on the 11th. Seems like my tumor markers are creeping up again. They are still very low, but he's going to watch them over the next couple of cycles. I will see him again in August, where he will check the markers again. If they are still going up, he wants to switch my chemo. The next chemo will be in pill form. Yes, I said pill form. This means a few things.

1) I won't have to go into Boston every week.
2) I get a break from being poked by needles.
3) This means that yet another treatment is crossed off the list. I really wish that these treatments last more than 1 year. The hormone treatments only lasted a year, and now this is a year. There are only an finite number of treatments out there, and if they only last a year each...well...

The side effects for the pill chemo is redness, ichiness and maybe rashes on the palms and the heal of the feet. It doesn't make hair fall out, so maybe I'll get my eyebrows to grow back.

I'm torn about this. I felt that this current therapy was working wonderfully, which it was. I'm afraid to change. And I had begun looking forward to my treatments every week. It was almost a comfort. I know, I'm weird.

Work has been great. I'm enjoying it a lot. They are keeping me busy, which is good for me.

I ended up in the hospital about a week and half ago. It started out with an infection: fever, naseau, and vomiting. Couldn't keep anything down, even water. Ended up in the ER and found out I was very dehydrated. After being in the hospital for 4 hours, they were ready to discharge me. I had my shoes on when I started to get the chills again. The nurse looked at me and could see that I was regressing. That's when they decided to keep me overnight. I craved water, and that's all I could think about, I was obsessed with drinking water. And no matter how much I drank, I still wanted more. It was crazy.

I was at this little hospital close to home, and it's pretty high tech. There's a barcode on my ID bracelet, and before they give me anything, they scan the bracelet, and then the meds/IV, whatever. It all goes into a computer. It's very neat.

Anyways, my 102.5 fever broke in the middle of the night, and that's when I started to feel better. I got to go home later that afternoon. I never want to feel like that again, it was horrible. Now I'm drinking water like it's going out of style. They told me I should be drinking about 9 glasses of water a day.

Nothing funny has been happening in my life lately! I need blog material!! :)

Just checking in

Hi everyone!

I'm just checking in to let you all know that I'm still here and doing well! Had treatment yesterday and all went fine. I see the doctor on June 4th.

Work is going well, I am enjoying it!

Thom's last day got extended until August 27th. The stupid people realized that they let too many go too soon and are now scrambling to keep enough people to finish the work that's left. Ugghh, don't even get me started on that #$@%! company. Closing that site is probably the worst decision they've made. Do you know how much experience and talent are going to be lost? It's a shame. Good for the company's who are taking advantage and hiring people.

Thom hasn't found anything yet. I wish that someone would realize how much talent and knowledge he has. Whoever gets him will be very lucky.

Happy Mother's Day to all the mom's out there, both to 2 legged children and 4 legged children! Mother's Day is also The Deadliest Catch Marathon. You bet I'm watching it! The commercial's are cute too, they have these rugged, manly seamen holding home-made cards for their moms. Makes me smile.

Speaking of my favorite show, I have to give my formal farewell to my favorite Captain, Phil Harris. God Speed Captain. You made me laugh often, and learning about "crab farts." You will be sorely missed. It's hard to watch this season knowing that you are only part of half of it.

Thom showed me something in our yard.

We have a robin's nest in a bush next to the barn. As we were looking at the nest, the mom robin was squaking at us from a nearby tree branch. Thom said she divebombed his head. What a good mommy bird. Oh and excuse my finger in the picture.

Well, time to get back to my show.

3 years

Today is the 3rd anniversary since I was diagnosed. Has it been 3 years already? Seems cliche, but it just seems like yesterday. I probably say this every year, but it's true.

Things have been good here, quiet, but good. Job is great, I like it very much.

Witnessed something funny the other day. Robins have made a nest nearby and from time to time, I see one of the robins sitting on our car. It will hop from the side view mirror to the driver's side window. Back and forth, back and forth. It seems like it sees it's reflection in the side view mirror, then tries to get this invader bird, and hops onto the side view. It's funny to watch.

I'm trying to grow my hair out. I want to see how long it will grow. It's in an awkward stage right now, so hopefully I can weather this out.

Captain Mayo will be back in the states for good in May. He's leaving Dubai and heading to Texas to be with his fiance. But first, he's making a stop in Brookfield.

Treatment went well yesterday. Feeling good.

Here's to another year!

New Beginning?

Quite a few things have changed in the last week.

Thom was offered a position in Chicago. To even see if this move was feasible, we had a real estate agent come to the house to tell us how much we could sell our house for. In the current market, we would get $50k less than what we owe on the house. There was no way that we could do this. So, the decision was made not to move to Chicago. But that also means that we are unable to move closer to Boston. At least not yet. Anyone want to buy a house in Brookfield?? ;)

I have a new job! I had an interview on Monday and got out at 2:30. At 3:30, I got the call that I got the job! Sahweeet! And that's all I'm going to say about that.

I really believe things happen for a reason. I start on Monday. But now Thom is going to be out of work on April 23rd, so we are just switching positions. No step ahead, but no step back either. Hopefully Thom will get a job soon too. Keep your fingers crossed for us.

I began driving a little again! I made it all the way to Millbury, which is like almost to Worcester. One day, I was just driving to Walmart which became like second nature, and I decided to see how far I could drive before I started freaking out. At every stoplight, I said to myself, "Lets just make it to the next stoplight." And I kept saying that. This is absolutely a miracle for me. I tried to produce an anxiety attack, but one wouldn't come. Could my medications actually be working?? About a month ago, I asked my doctor if there was something else he could give me to control the anxiety, because I felt like I needed just a little something else to push me over the hump. This is going to sound weird, but while trying to induce an attack, I actually felt the anxiety hit a wall and it couldn't get through it to escalate. I felt such elation! Do you know what this means?!? I am not a prisoner to myself anymore. I won't have to depend on people to drive me everywhere I need to go. How amazing that would be!

In other news, Chemo is still going well, I'm feeling good.

Thanks for standing by me.

Voice

I got sick around March 3rd, had a very nasty cough, so nasty, it made me vomit (TMI I know). I was coughing so much that I lost my voice, and I mean lost it. I couldn't even speak at all. Thom enjoyed that time because it was quiet! That lasted for a good week and a half. I got some cough medicine from my doctor and that worked miracles. No more coughing, which gave my voice box and larynx time to recoup. But now I have my voice back, it's still froggy, but at least I can talk.

Still looking for a job.

We're having a real estate agent coming to the house tomorrow to look at it and appraise it etc. Just to see. We don't have any kind of plan yet, and that sucks. I hate having things up in the air like this.

Treatment's going fine. The IV's are getting harder to put into my hands because they've been poked so much, they've developed scar tissue and they have to press harder to get the needles in. Truth be told, that's the worst part of it. The veins are more prone to collapsing because they're poked a lot. I'm surprised I don't have track marks! ;)

I've been slowly getting rid of the clutter in the house. I have a huge pile to donate/sell whatever. It's amazing the amount of stuff you accumulate over the years.

Well, I'm going to go take a dog out for a walk. I can't take both of them at the same time because they kill me. I get so exhausted. But I always feel bad for the one I leave behind because they look at me like, "Mama, why aren't you taking ME?!" Breaks my heart. I need Ceasar Milan to come and show me how to be a better pack leader. That guy is utterly amazing. I watch his show and try to implement his techniques, but it doesn't work. Max is a good boy, I took the time to train him. But Tanner? She's a bundle of energy and she makes me so tired.

Anyways, talk soon!