Merry Christmas Weekend

I am so excited--it is Christmas weekend!  I really like the fact that we've got an entire weekend plus Monday before Christmas.  I have most everything done in preparation for Christmas except for those few things that you can't do until just before (like preparing some foods).  So it will (hopefully) be a relaxing, enjoyable weekend with Ed and Dan.  Last night I baked up some Cranberry Nut Bread and it filled the house with the wonderful smells of Christmas.

The best gift is that Dan came home last nite after work. He surprised me by getting home earlier than I thought (he got out of work early).  I know...he's only been gone 4 days...but I love having my family together.  It sounds like his new job is going really well and he enjoys the people and the work.  It also sounds like a very nice place to work.  Now if we can just find him a place to live.  Although Nate and his family have been very welcoming of Dan and making him feel at home which I soooo appreciate.  They better be careful, though--he may not want to leave!

Well, I'm off to be productive but before I do, I want to wish all of you a very Merry Christmas and hope you have the opportunity to spend the holiday with family and friends!

Everyone seems to be posting on FB what their "Elf on a Shelf" brought their child.
So Ed took this picture of what our "Elves on a Shelf" brought us!!

An Exciting Week

Wow--what a week it has been!

I am thrilled to share that Dan got a full-time job in his field of study (architecture).  He interviewed on Friday, December 7th, was offered a job and accepted it by the 11th, and starts on Tuesday, 12/18.  He'll be working at Donald Lang Architects in Waban (Newton), MA, as an Architectural Designer.  Waban is about 1.5 hrs from here so he will be staying with his friend Nate and his family in Beverly until he can find a place of his own.

So this past week, Dan has been working full-time at ES (he usually only works 18-20 hrs) since he was only able to give a 1-week notice.  On top of that we've been trying to find a place for him to live and he has also been trying to get ready for Christmas since he now has less time for that than originally planned.  It is all good though.

I am sorry to report that Dan and Cassie have broken up.  They have been together for about 3.5 (almost 4) years.  The past 1.5 yrs have been tough on them as they have been apart (Cassie in NY and Dan in RI then at home).  I wish them both the best--they are both sweet people and I hope they still remain friends since they so enjoyed each other's company and doing things together.  But both their lives have changed since graduating college and that just makes it tough.

And in more bad news, Wednesday night Ed called me at work to let me know Dan needed to go to the ER.  He dropped a sheet of glass on his foot and it landed on the top of his left foot giving him a good gash (yes, he was barefoot).  Our neighbor Kay (retired ER nurse) came over and confirmed it needed stitches and she wrapped it up and called her friends at the Mary Lane ER to let them know we were on our way.  It required 5 stitches and thankfully Dan is getting around fine with it--just needs to change the bandage daily and then get stitches out in 7-10 days (which we're trying to figure out since he'll be in Newton/Beverly and then it's Christmas).



Dan at Mary Lane ER waiting for the doctor.

Ed had another treatment this past week and continues to experience stomach pain but he's trying to cope although it is slowing him down and he's tired and having some level of pain most days.  I'm trying to be patient, but anyone who knows me, knows I'm not the most patient person in the world (poor Ed).

Of course, as much as I was beginning to think I needed less drama in my life, the events in Newtown, CT unfolded Friday and put my life in perspective.  As with many of you, we are deeply saddened by this tragic event and we are reminded to hold our loved ones closer and cherish each day.  May God bless the victims of that tradegy and may their families be comforted by our prayers.

Today we put up our tree so it's beginning to feel a bit more like Christmas around here.  It will be so odd not having Dan with us this week, but he'll be home next weekend and thankfully has both Christmas Eve and Christmas Day off so he'll be home from Friday night and go back Wednesday early morning (he'll drive right to work).  We have loved having him home with us this past year and I keep reminding myself that we're lucky he's "only" 1.5 hrs away.

If I don't get a chance to write again in the next week, may you have a Merry Christmas!

Time to Get Ready for Christmas

I just returned from a business trip in Tallahassee.  It was a good meeting and the weather was beautiful (in the upper 70s).  But I was away three days and at this time of year that is so hard.  It took me a bit to get back in the groove on Saturday, but as of today I am back into being productive.  It's a good thing too since Christmas is just 2 weeks away!  Gasp!  How did that happen?!

Thankfully I've got most of my shopping and baking done.  Ed and Dan put some outside decorations up a couple weeks ago and today Ed did more decorating inside while I worked on Christmas cards.

Ed has not been feeling well the last several days and spent all day Saturday in bed.  He's tired and his stomach is bothering him and he's achy.  He's up today though doing some decorating so that's a good sign.  Here's hoping things improve, but he does have another treatment this week so who knows what that will bring.  Well, need to go turn on the Christmas lights.  I love this time of year.  I just wish it lasted longer.

An Elf on a Shelf arrived on December 1st thanks to my sister Theresa

Stayed at the Doubletree while in Tallahassee.  They take good care of the Hilton HHonors members!

The view from my room.  Capital building directly in the middle.  Turlington Buiding to the right where our client is located (the Dept of Ed).

Celebrating Three Years

Here we are....three years after Ed's original diagnosis.  Hard to believe it's been 3 years, but we are very grateful.  We never thought of or imagined three years.  At the time of the diagnosis, we were hoping for 6 months, then another 6 months, and then another.  Milestones are harder to set at this time since we never thought beyond those first few milestones.  And with every CT scan or any random day of the week, I keep waiting for the gauntlet to fall.  I know it's looming over our heads ready to strike at any moment, but it hasn't and so we continue to press on and live life to the fullest.  We realize that, although Ed is living with cancer, the key is that he is "living".  There are so many people who have passed in the past three years either due to this terrible disease or for some other unforeseen tragedy and we realize how lucky we are and are continually reminded how every day is and remains a gift.

And although there are days like today where Ed is in pain and he doesn't feel well and goes back to bed, the good days outnumber the bad and there are so many who are so much worse off, dealing with terrible health issues or have sudden tragedies and lose loved ones.  So instead of focusing on our negatives, we continually remind ourselves of the positive and that's a much healthier perspective to have in life.

Ed did have a CT scan last week and the good news is that there are no new growths.  His shoulder pain looks like arthritis and Dr. B will be referring him to the orthopedist.  He also gave him some stronger pain medication and a prescription for a Lidoderm patch which should help with the pain in the meantime.  This is the biggest issue Ed is having right now and the pain keeps him awake at night.  The pain meds and patch seem to help and it will be good when he can see an orthopedist.  I am glad that we asked them to look at this area more closely during the CT scan.  At least now we can rule out cancer in that area as the cause of the pain.

In terms of the cancer, the lungs are stable; lymph nodes in the neck are down.  Tumors in the chest have shrunk and no changes in the liver.  This is all good news since it means the current treatment regimen is effective at knocking down the tumors and/or keeping them at bay.

There was some evidence of additional fluid in the abdomen and the mesentery (described as the "saran wrap" holding intestines) is more prominent and could be causing some weeping of fluid into the abdomen.  Difficult to tell though and something to watch in the future.

Ed's white and red blood counts are okay; liver function test is slightly elevated but same as September and there is no protein in the urine.

So, in other words...no significant changes and the current regimen is keeping the tumors from growing.  So we'll continue with the current treatment pattern for now.

Thank you all for your continued thoughts and prayers!

Happy Thanksgiving

We had a great Thanksgiving Day at my mothers with the entire family.  I love Thanksgiving because it's just a nice day to spend together, over dinner, and to acknowledge all the things we have to be thankful for.

This year, instead of trying to get a family photo around the dining room table, we actually posed for one so that we could actually see everyone.  I hope this is a start of a new tradition since I think this photo is great!



Hoping you all had a wonderful Thanksgiving and now onto the crazy pre-Christmas rush!

Cruisin'

On Nov 14th we flew to Miami to catch our cruise--a 3-day Carnival Glory cruise to the Bahamas.  This was Dan's first cruise and mine and Ed's second cruise (having done a 3-day cruise last year with my sister Cathy and her family).

The ship departed from the Port of Miami on Thursday evening.  The ship was scheduled to leave at 4 PM but we were delayed a couple hours.  So instead of seeing Miami Beach as we departed, we instead saw city lights at night.

Friday morning we arrived in Nassau, Bahamas.  We didn't arrive until around 10 AM so Dan and I tried out the exercise bikes in the gym beforehand and could see Nassau in the distance as we working out.  Nice view that I wish I could see every day!  We decided on an excursion to see Atlantis which was a good way to see that property.  Before we left on that we walked over to the Marketplace and picked up a couple souvenirs.  The Atlantis excursion was informative and we saw a lot of the properly.  Even put some $$ in a machine at the Atlantis casino (so we could say we did)!

Friday night was "elegant" night for dinner and so we dressed up (yes, can you believe it?) and the guys were also good about posing for pictures for me (hoping I could get at least one good family picture out of this trip!).  Dinner was very good and we also agreed beforehand that we would try the "didja ever..." appetizer where they put something unique on the menu for you to try.  The first night was cured salmon (which I didn't care for).  Night 2 was alligator fritters (which were good).  Night 3 were frog legs (looked like frog legs which was not appetizing, but they tasted like chicken pretty much).

Saturday morning we woke up as we were arriving in Freeport, Bahamas.  Now the port at Freeport is in an industrial area and I didn't take this into consideration when I woke Dan up at 6:15 am to see the sunrise.  Not only were there some clouds, but there was no horizon at sea.  Rather it was a horizon of barges, container ships, and huge oil tanks.  Oh well, sleep is overrated, right?

While in Freeport, we took a shuttle to Port Lucaya where there is a Marketplace and you can also walk down to the beach.  We did walk down to the beach, put our toes in the sand and water, but didnt spend too much time there.  It was windy and cool.  We then headed over to the Marketplace which wasn't much different than Nassau but the vendors seemed more pushy.  So after a couple hours in Port Lucaya, we went back to the ship to grab some lunch and play some mini golf.  It did rain a bit while we were in Freeport, but thankfully we were back on the ship before it rained hard.

Monday morning we were up early again since we needed to disembark (sad face).  We had a nice breakfast in the main dining room before leaving though.  Overall, the cruise was great!  We got a balcony suite so that there was plenty of room for the three of us and there was.  Our cabin steward was very attentive and took good care of us.  Our wait staff on night 2 and 3 was great.  We all agreed that next time we need to do more then 3 days--just not enough time to try everything on the ship.  So I guess that's always a good sign whether your vacation is good--you can't wait to go back!

Monday we spent the day in Miami and did the Grayline HopOn/HopOff tour.  This included both a city loop through Coconut Grove, Coral Gables, and Little Havana and a beach loop that brought us to Miami Beach.  We got off in Miami beach to checkout the Art Deco and to walk on South Beach and check that out.  A couple showers that day that caused some flooding in Miami Beach but we avoided them since we were sitting at a bayside restaurant having lunch when they came through.  Good timing again on our part (okay, it was pure luck!).  For us, the weather was sunny and 80 degrees--loved it!

Ed faired pretty well on the cruise except he continued to experience significant shoulder pain that kept him awake at night (which in turn meant he was waking me up too!).  Also, on the day before we left, Dan helped Ed shave his head since he had bald spots where his hair was falling out.  The hair loss was slower than last year, but still unfortunately a side effect of his current chemo treatment.  I know Ed hates losing his hair (it's such a reminder every time he looks in the mirror) but I keep reminding him that it's a small thing compared to the alternative.  Ed goes for his next CT scan on 11/28 and then we meet with Dr. B on the 29th.  Hoping we can get some more info about the shoulder pain which is really becoming difficult to manage.  I'll continue to keep you posted on that front.  In the meantime, enjoy the pics below from our cruise.

On the ship, Port of Miami  - Before we got our drink!

Dan and Ed, Port of Miami - We've now got our 'Drink of the Day'

Lido Deck, Carnival Glory

Atrium, Carnival Glory

Our Ocean Suite with Ed stepping out onto the balcony

 

Nassau, Bahamas

Atlantis, Nassau, Bahamas

 

Dan and Ed

Ed and Jeanne



Arriving in Freeport, Bahamas

Dan getting his feet wet.  Freeport, Bahamas

Ed, Freeport, Bahamas

 

I was there too!  Freeport, Bahamas

Nice picture of us taken by our terrific waiter, Gusti!

 

Frog legs!

 

South Beach, Miami Beach, Miami

 

Jeanne and Ed, Freeport, Bahamas

 

 

Welcome Bryce!

On November 2nd at 3:20 PM Bryce Harper Pariseau was born to our niece Missy and her husband Dennis.  He weighed 7 lbs 7 oz and was 21" long.  Congratulations to all!!

October Activity

October was a good month with a number of small events.  On September 30th, we celebrated my 50th birthday and on October 11th we celebrated Ed's 60th birthday.  We'll be taking a cruise in November to celebrate these milestones and Dan's graduation so nothing big on these actual days.

On October 7th, we went to Mike and Deb's for a nice afternoon of watching football, sitting by the firepit, and having a nice dinner of deep fried turkey (which was as good as everyone always raves about).  It was a very nice relaxing day.  Dan had gone off to NYC to visit Cassie so he didn't go but I know he had a good time in New York where they visited the Intrepid.

On October 21st, I did my 2nd 5K run.  Mind you that I do not run 5Ks because I find them "fun".  Rather I run them to prove to myself that I can do it.  The one I ran back in April was my first one; this 2nd one was to prove that the first one wasn't just a fluke and that at 50, I could still do this and finish with a respectable time.  I did not train/prepare for this one as much as I did for my first one (it was 2 weeks before when I realized I hadn't run 3 miles on the treadmill in months!).  My goal though was to run the entire course (no walking)--which I did--and finish with a good time--which I also accomplished (31m15s)!  So I was quite pleased.  I will probably do another one in the spring.  Having this target event I'm hoping keeps me working towards this goal (in other words, hitting the treadmill versus sitting on my butt!).

Later in the month, my mother and I went to see a concert put on by our Diocescan priests, including my pastor, Fr. Vern.  It was a great concert with a sold out crowd.  Even better was spending an evening with my mother.  We had dinner at Bernie's in Chicopee and didn't have to wait long, got to sit in the train car, and the food was great with enough for two meals!  I had never been there before but people rave about their prime rib which I saw two gentlemen having who were sitting next to us.  They are HUGE!  The place does get packed, so if you go, go early or be sure to have reservations.  I definitely plan to take Ed there at some point.

We ended the month with the traditional Brzycki Halloween celebration with the family over.  For the first time in many years I didn't dress up, but Ed did (for the first time in ever!).  Thankfully Hurricane Sandy, although devastating in NJ, NY, and our beloved Misquamicut, did not impact anyone here in western MA which we were so thankful for.

Ed continues his biweekly chemo treatments (no changes there).  He does experience some body pain (in particular in his shoulder) and he has some days that he gets quite tired.  But he's learning to manage these better.  His hair is beginning to thin which he hates.  But overall, he continues to fit this nasty disease and for that we are thankful.

Me finishing the 5K race

Of course Ed and Dan were there, but Cathy, Nick, and Lexi also came out to support me

Halloween.  Uncle Eddie with Nick, Matt, Lexi, and Ali

Fall Has Arrived

Okay, how did we go from early September to the end of September??  Somewhere in there I lost a couple weeks!

Not a lot to report, but since it's been a while, I figured I'd give you some brief updates.

Ed is tolerating his current treatments (Irinotecan, Avastin, and Xeloda).  He definitely is not as fatigued as when he was on the previous regimen.  However, one side effect of this combination is high blood pressure so he's taking a 2nd medication to help manage that and needs to check his blood pressure regularly.  Dr. Bower is also keeping an eye on protein in the urine since that's a side effect as well and why Ed had to discontinue this regimen earlier this year (since protein in the urine can lead to kidney failure).  Yesterday Ed let me know that he's noticing some hair loss.  (The pile of hair in the drain after showering is getting bigger.)  He does NOT want to lose his hair again and this really pisses him off.  But I try to remind him that this is minor compared to the alternative.  Easy for me to say though, right?  As we all know, losing your hair is that outward sign that says "cancer patient".

I know folks keep asking when his next CT scan is and the truth is I don't know.  He only has treatments scheduled through this week.  So based on how the bloodwork looks this week, Dr. Bowers will either extend his current treatment plan or will order a CT scan.  So I should know more later this week.

In other news, Ed and Dan made a ramp for our new shed last week, so that's done!

Still no leads for Dan on a job.  I know it's discouraging for him.  However, both him and Ed are enjoying the fact that they can play golf together whenever they want.  In fact, they played together earlier this month in a "King of the Grove" contest.  Ed won (his third time) and Dan lost (so he got his money back).  They're playing another tournament tomorrow and are looking forward to that.

So we're doing good.  Enjoy these last few days of September.  I know I plan to!

Welcome September

Did I tell you I love September?  I mean, I love the summer but September marks the beginning of Fall which I love.  When I was younger, it was back to school.  Now it is cooler nights and days, leaves turning colors, fall fairs (Big E!), and just a wonderful time of year.  I can't believe we're already one week into the month!

Last weekend, Labor Day weekend, we spent replacing our shed.  This is the shed that was crushed in the October snow fall last year.  We looked into various options for replacing it--purchasing a pre-made one, paying someone to build one for us, or buying/installing another metal shed.  Well, we settled on buying another metal shed since this was one of the least expensive options (by a couple thousand dollars) assuming we installed it ourselves.  Our last shed Ed and I installed about 20 years ago (so it lasted a while until a tree fell on it!), so we figured with Dan helping us, we could give this a try.

So we started Labor Day weekend.  Saturday was spent tearing down the old shed and then lifting the old framing/platform to raise it further off the ground (to maybe prevent groundhogs from hiding under it?).  Sunday was reinforcing the platform and laying a new plywood floor and then we began the actual shed construction.  Monday we continued with the shed construction but we didn't finish so we covered everything up with tarps for the week.  And yesterday we finished it up!

Somehow we didn't kill each other.  Although it's a kit, anyone who has ever worked with putting together metal buildings knows that things don't align or fit the way they are "supposed" to.  And it was HOT last weekend, so there were a few times that it tested our patience.  But thankfully with three of us, at least one of us remained calm/cool at all times (usually me!)!  I was very thankful Dan was home too since he was a big help!

Nov 2011: The old shed after we removed the tree from on top of it.



Sept 2012: The old shed gone and just the floor frame remaining.



 

All done!

It was good that Ed did not have treatment before Labor Day because then he would have had no energy to help with this project.  But it's now done and we feel good about what we accomplished.  Now here's hoping it lasts us another 20 years cuz I'm not doing this again!

Ed did have his treatment on past Thursday (9/6) and he felt pretty good afterwards.  He said he rested a little after he got home, but he seemed like he had a lot more energy and was in better spirits Thursday night and Friday.  Today (Sunday) his back is bothering him, but that probably has more to do with working on the shed than the cancer and his treatment.  So hopefully this regimen will shrink the tumors (or at least keep them from growing) without totally wiping him out.

Dan continues to look for work.  He has an interview in Boston tomorrow (Monday).  As much as I would have preferred him to work in Northampton, he never heard back from that firm which is disappointing.  But Boston is not that far away and so I'm (once again) keeping my fingers crossed for him.

In sad news we heard that a dear old friend, Pete Cavanaugh, fell and died back in August.  Ed and Pete became friends when they worked together at Amherst Tire and we played softball together (some 30 years ago!), and Pete was in our wedding party.  Pete had moved to Portland, ME, many years ago and over the past couple years we have lost touch with him.  Just another reminder of how quickly life can change.  We'll miss you Pete!  May you rest in peace!  And may the rest of us be reminded how each day is a gift.

AUGUST BEACH PICTURES
(which I promised to share in my previous post)

Ed and DeeDee

Me and Mom

My sister Cathy, me, and Ed

Family Photo!

Enjoy the fall; enjoy September!

End of August

Here we are....at the end of August.  Before I forget....Happy Birthday to my sister Marion!

We all had a terrific time last week at Misquamicut and we thank my mother for allowing us to stay with her.  Beautiful weather (it rained only one day) and lots of fun and relaxing time spent with family and friends.   Ed and Dan went deep sea fishing one day.  And the rest of the time was hanging out at the beach, playing cards, or just hangng out.  I'll post pictures later.

Right now I know some of you are wondering how Ed's CT scan went on Monday.  We met with Dr. Bowers this morning and Ed was scheduled for treatment afterwards.

First the CT results...

• New spots in the lungs (5 mm).
• Spots showing growth 1-2 mm
• Center of chest unchanged
• Lymph nodes upper left: 1-1.5 mm growth
• Liver: no change
• Lymph nodes in abdomen: little growth
• Summary:  a little growth; not a lot
• Dr. B: "don't like it"

Time for a new plan of attack!  We discussed various treatment options including some new drugs, experimental drugs, Mass General clinical trials, etc.  Dr. B. wants to discontinue the Oxyplaten since the cold sensitivity is lasting longer than it should.

So we decided on the following:

• Xeloda:  every day/2x a day (Ed has been taking this 7 days on/7 days off); on this schedule he can stay with the pill form otherwise it would be administering this via a 46 hr pump
• Irinotecan:  this was one of the original drugs Ed was on; this is the drug last fall that caused Ed to lose his hair
• Avastin:  this was also one of the original drugs Ed was on but caused protein in his urine so he had to be pulled off it before it caused kidney failure.  Dr. B. will need to continue to monitor this closely.  If protein in the urine becomes a problem, we'll have to look at Erbitux again.

Yes, this is the combination Ed started with.  We hope it will be effective with no serious side effects.  And since we need to get pre-approval from the insurance company, Ed did not receive a treatment today and is now scheduled for next Thursday.  The good news is that this means he won't feel (more) tired/sick over the labor day weekend.  And since Ed has been tired and achy pretty much every day, we're hoping the changed treatment plan will help him feel better overall.

Time will tell and I'll keep you posted.  For now, though, just one day at a time.

Learning to Plan Accordingly

Ed had a treatment this past Thursday (8/9) and based on his reaction from the last one, we are learning to plan accordingly.  We anticipated that he would be tired and achy and his stomach being queasy for a couple days and that is what is happening.  He went into work on Friday and was thinking he'd work all day...I nagged him into not doing that since it takes too much out of him.  Thankfully he listened to me.

Yesterday morning (Saturday) he wanted to run some errands with me even though I told him it wasn't necessary.  Well an hour into the errands he was beat.  So we came home and he spent most of the rest of the day in bed.  Which I'm fine with--he needs to listen to his body.  But he hates it!  He can't stand that he's not productive and can't do anything.  But hopefully if he takes these few days to enable his body to recover, he'll then be fine.

So after his last treatment in late July we made the decision NOT to go to the beach this weekend with my Mother.  It is tradition that we go down with her and get unpacked and then spend a couple days together.  But in light of how we anticipated Ed feeling, we bowed out this year.  Clearly it was the right decision.

As they say, it's all about learning to manage the side effects and since Ed really didn't have any for 2 years, he's just learning how to do this.

In other news...  Dan's car is undriveable.  Well, he was driving it when Ed noticed a problem with the rear axle.  Something is rusted (you would have to ask Ed for the details) and could break at any moment.  So it was either try to find parts and repair it or find a new car.  It's a 96 so finding parts isn't easy or cheap.  This has been a good car...we got it in 2004 so Dan has gotten almost 8 years out of it.

God provided though.  Ed talked to Marvin who gave him a lead on a car where they had just bought a "For Sale" sign.  And now they don't even need to use it.  Ed and Dan checked it out--perfect!  2005 Ford Taurus with only something like 48K miles.  In excellent shape.  Just need to deal with registration, plates, etc., this week and then that will be done.  Woo Hoo!

Other excitement...last Sunday I went to a baby shower for my niece Missy who is expecting a baby boy in October!  The shower was a lot of fun and she got some great stuff--stuff she definitely needs!  This is a miracle baby (she had been told she couldn't get pregnant) and we're all excited for her and her husband Dennis.  Can't wait for Bryce Harper to arrive!  (And Dan is excited about this name since it was one he suggested!)

Enjoy the rest of August and summer!  For the first time in 20-something years, no "back to school" for us!!

End of July

Sorry I haven't written and not sure how we went from the end of June to the end of July so quickly!  Summer just tends to fly by!  So let me try to recap the month for you...

For the 4th of July, we just stayed home and then went to the fireworks at UMass that evening.  We haven't done that in years so it was nice to do that.

Earlier in the month we did celebrate my brother-in-law Tim's (married to my sister Cathy) 40th birthday with a BBQ/picnic at their house.  It was nice to have the whole family together and just hang out and enjoy the day.

Ed continues plugging along.  He is still only going for treatment every two weeks since they have discontinued the Erbutix.  Some days are good days and some days are bad days.  Immediately after treatment he usually feels fine--maybe just a little cold sensitivity.  But by the next day, he doesn't feel as good--tired, achy, queasiness, etc.  And the cold sensitivity lasts for about a week now.  I keep telling him that this is expected and that he needs to just learn to take the time to rest and go slow after treatment.  But after 2 years of going to treatment and feeling great, this is hard for him to accept.

The steriods definitely helped to clear up the rash on his face and he definitely feels better than he did the last couple months, but he won't listen to his body and continues to try to do everything and work full-time.  I don't think the heat earlier this month helped either--I mean, that slowed all of us down!

Last weekend Dan went to Boston with his girlfriend Cassie and two other college friends (Nate and Jen).  Ed and I took some time off of work and we headed to Mystic, CT.  On Sunday we stopped by Foxwoods (no, we did not win big) and then Monday we went to the Mystic Aquarium.  I think it was good for our mental health--to have a couple days off to just relax and do something fun.

Ed had another treatment this past Thursday so today is a slow day.  His body is achy and I finally convinced him to take the pain prescription Dr. B gave him.  His next treatment is scheduled such that he'll have some time to recuperate before our vacation.  He's really hoping that he's scheduled it such that the cold sensitivity will be gone so that he can at least put his feet in the water.  Can you imagine going to the beach and not being able to go into the water at all?  Regardless, though, I hope he's feeling well enough to enjoy being on vacation--I think it will do good for his spirits!  I know I'm looking forward to it as is Dan!

At Mystic Aquarium's "Birds of the Outback" (we're feeding a parakeet)

Yes, we bought the touristy photo...why not!  We never get pictures of the two of us together!

End of June

Here we are at the end of June...how did that happen?  Wasn't it just the beginning of June?  Oh well, seems time and life move quickly lately.

This is traditionally the time of year when we head to Misquamicut for the week so I am missing that terribly.  For the past several years I would be sitting in the cottage right now, sipping a cup of coffee, reading a book, and watching the sun rise in the sky.  Then we'd be spending the day over at the beach soaking up the sun and just totally relaxing.  But because the cottage we usually rent was no longer being rented and because we were expending vacation time and dollars on Dan's graduation, we decided to forego our July vacation this year.  But as much as I'm longing for the beach right now and missing that vacation, it is true that everything happens for a reason.  Because the reality is that Ed would not be able to enjoy the beach right now.  Due to the Erbutix, he needs to stay out of the sun and that's very hard to do when you're vacation at the beach!

As I mentioned in my last post, Dr. Bowers has stopped the Erbutix until Ed's rash clears up.  Ed had another appointment this past Thursday and, after seeing how bad the rash continues to be, Dr. Bowers prescribed steroids for Ed.  He's hoping this will help to clear up the rash in the next week or two.  Once it does clear up, they will consider reintroducing the Erbutix but in a much smaller dosage.

In other news, earlier this week, me, Dan, and my mother went to Hampton Beach to see the sand sculptures.  This is something we've always wanted to do but never worked out mostly because we were headed to Misquamicut around this time.  So we planned on Monday even though rain was predicted.  Thankfully we got there and were able to see the sculptures and walk on the beach for a bit before the deluge of rain came.  So while it poured, we hung out in the "casino" and played some arcade games, did some shopping, and had a nice lunch on a covered porch.  Although it would have been nice if the weather was better, as my mother said "it kept the crowds down".  Plus we simply wanted to see the sculptures and checkout Hampton Beach which me and Dan haven't seen in about 15 years.  It's amazing how much hasn't changed.  All-in-all, it was a great day and next year we're planning to go back up when they are actually doing the sculpting (versus just seeing the completed projects).

1st Place

Grandma and Dan

Grandma and Dan playing Skee-Ball. Same machines and still just a quarter to play!

Playing the quarter "slots"...of course you only win tickets, not $$!

Our view while having lunch at the Purple Urchin.

Summer Has Arrived

It is officially summer and it will officially be a heat wave when we hit 90 degrees today (needs to be over 90 for three days in the row)! But thanks to air conditioning, it really is not bothering any of us.

I realize I haven't written in about a week and I apologize for not providing any update. Ed was scheduled for his second "long" treatment yesterday with both the Oxilaplaten and the Erbutix. However, Dr. B decided to forgo the Erbutix this week since Ed has a pretty bad rash on his face and chest. He is taking a prescription to counteract the side effects and Dr B upped his dosage yesterday. To see what the rash looks like, you can google it, but it basically looks like a very severe case of acne all over your face. It's not painful but Ed needs to constantly apply Oil of Olay with SPF on both his face and chest and needs to be sure he's wearing a hat and shirt if he's in the sun.

Ed did notice a little cold sensitivity after yesterday's treatment. He stopped to buy milk on his way home (which I yelled at him about) and holding the handle of the milk carton caused tingling in his fingers (but no terrible pain). So he's being careful not to drink cold liquids for a couple days. Thankfully it's not any problem being in air conditioning.

And he's slowly getting more energy. Earlier this week he did some stuff around the house (laundry, made dinner, etc.) and yesterday he actually went into work for a few hours and wasn't totally wiped out afterwards. He'll be going in again today so hopefully he doesn't overdo it and still feel okay this evening. He feels his liver is shrinking and that it feels less "hard". All of this is just a sign that we might be starting to get the upper hand with the tumors which means we're moving in the right direction! We'll remain hopeful...

Happy Anniversary

Today is our 28th anniversary!  Wow, time does fly when you're having fun!!

Unfortunately we won't be doing much to celebrate since Ed is still feeling quite fatigued.  He had a doctor's appointment yesterday (just for the Erbutix) and Dr B said it would probably take a couple more weeks before Ed starts feeling better.  That Ed doesn't really realize how much his body is trying to fight the cancer.  I guess he's lost about 10 lbs over the past 1-2 weeks.  I wish I could do that--just not the way Ed's doing it!

So we'll hang at home this weekend celebrating both our anniversary and Father's Day.  The good news is that Ed is still here for us to celebrate both of these events.

Happy Anniversary, Ed!  Love ya...

Not Much to Report

Well, unfortunately, not much to report.  Ed's "good" day on Friday lasted just that day.  Since Saturday he continues to be seriously fatigued.  Sunday he did use his riding mower to mow the lawn, but that's the extent of his energy.  He still does not have the energy to return to work and he "looks" tired as well.

Thankfully he has only experienced some slight cold sensitivity and tingling in his fingers yesterday and only for a short period of time.  So no serious neuropathy and no rash yet.  To me, it's clear the cancer still has the upper hand but hopefully with continual treatments (his next treatment is Friday), we can knock these tumors down and give the good cells a chance to fight back.  Maybe then he'll begin to start feeling better.

I'll continue to keep you posted....

Still No Side Effects

Good news so far...  Ed is not yet experiencing any side effects from the treatment.  Most surprisingly, he does not have any cold sensitivity or tingling/numbness in his fingers/toes.  He is avoiding drinking cold liquids still, but he has no problem taking things out of the frig or touching things that have just come out of the frig.

And yesterday he looked better and had more energy than he's had in two weeks.  Dan was home with him for the day and after I got home from work, I found out that they went out to Dick's and Marshalls--so he must be feeling better!  He's still experiencing night sweats and still not 100%, but sooo much better than even a few days ago.  So we should be over the hump with this first treatment.  Hopefully he continues to fair well after subsequent ones.  One day at a time though.  Thanks for your continued support and prayers!

Thursday's Treatment

Since I know some are wondering how yesterday's treatment went, I wanted to provide a quick update.

Overall, it was uneventful.  It was a long day (6 hours).  Started with a shot of Bendryl, then a bag of Aloxi (to prevent possible nausea), then the 800 mg of Erbutix, a bag of calcium/magnesium, the Oxaliplaten, and then another bag of calcium/magnesium.

Ed didn't seem to have any negative reaction during the treatment and none after we got home.  He did not "test" the cold sensitivity (stayed with drinking room temperature liquids and had no need to go into the refrigerator).  We'll see how he does today and this weekend.

He will be going back weekly for the Erbutix (about a 1-2 hr infusion) and bi-weekly will be the Oxaliplaten as well.  Future sessions should only be about 4 hours long since yesterday they had to go slowly to keep an eye on Ed but since he did well, they can probably speed up the drip slightly next time.

Thankfully an uneventful, but long day...

Everyone has a story...

I believe I'm an optimist.  I try to see the glass as half-full and I try not to dwell on things that I cannot change.  And on those days when this is harder than usual to do, God subtlety reminds me...

Tuesday night while talking to a friend about Ed's treatment another woman (who is an acquaintance) was listening and joined our conversation and was offering support and comfort (not that I was looking for it, but that is the type of woman she is).  In the process of our conversation, I learned that she has rheumatoid arthritis and crohn's disease (this is a woman about my age).  I've known from observation that she has struggled for years with health problems, I just never knew specifically what.  Later in the conversation, I also found out that her husband (who looks like the picture of good health) suffers from terrible seizures.  These usually happen at night and she needs to be ready to respond and care for him when it happens (while dealing with her own issues).  Everyone has a story...

Yesterday, while at CVS dropping off Ed's prescription, the pharmacy was quite busy so I was standing back waiting until someone was available.  This older woman, in her 70s/early 80s, stands in front of me and says (to no one in particular), "I just have a question"--like this justifies her cutting in front of me.  So at first I'm just watching her and wondering if, when someone is available, she is going to cut in front of me.  Not that I really care...I'm not in any rush, but we'll see.  Then as we're standing there, she begins to talk (again to no one in particular, but I'm the only one standing there) about "...what a day it's been...", "...haven't been home since 7 am..." (at this point I'm thinking "whoa is you")...  As she went on, she shared how her husband is in a nursing home right now, the total confusion about his doctor's appt that day, how she had a heart attack in February and her husband had heart bypass surgery shortly thereafter, etc. (I can't recall all the details).  But the point is that here she is, after having her own health problems, running around dealing with her husband's. Needless to say, when someone was available to help us, I let her go first.  Everyone has a story...

And maybe other people's stories are God's way to help you put your own story in perspective and help you get through the day seeing that glass half-full and remaining optimistic...

Today's Doctors Appointment

So I know some of you are anxiously awaiting the results of today's doctors appointment.  Well, there was no infusion today because we hadn't received pre-approval from the insurance company by the time of Ed's appointment.  Dr. Bowers, though, did recommend that Ed at least start taking the Xeloda again starting tomorrow (this is an oral prescription that Ed already has).

Dr. Bowers also strongly recommended that Ed start the Erbitux along with the Oxaliplaten.  In his words, the tumors are "growing quickly" and so we need to be aggressive in attacking them.

We also were able to discuss how Ed is currently feeling and, as a result, I made a trip to CVS to pick up three prescriptions:

1. Furosemide is a diuretic to help with the swelling since Ed had slight swelling in the ankles.  So Ed needs to be sure he's elevating his feet when sitting (another reason for him to lay back in his recliner!)
2. Doxycycline is to combat the rash that is likely to occur with the Erbitux.  To start, Ed should use Oil of Olay with SFP15 on his face and skin exposed to the sun (there's goes my supply of that!) but if the rash becomes more than just slight, this is to try to manage that.
3. Nucynta is to manage pain.  Ed is currently taking Tylenol (Ibuprofen) but Dr. B gave him a script of the Nucynta if he needs it and also told him to take Tylenol PM at night to help him sleep (since that's been a problem).

Ed's little collection...

Thankfully we've got fairly good insurance for prescriptions.  While I was out doing all this shopping, Dr. Bowers office called and they got the pre-approval from the insurance company and so Ed is scheduled to go in for his infusion Thursday morning at 10:15.  It will be about 4 hrs--two hours for each plus some added time because they will also be giving him four (I believe) other drips to manage side effects.  I'll get a list tomorrow!

So that's the news for today!  We'll continue to keep you posted.  In the meantime, thanks for your support and prayers!