Thoughtfulness

Last night Ed's golf partner Mike brought us Polish food for dinner!  What a nice and pleasant surprise! For those of you who don't know, Ed does the cooking around here.  He loves to cook and gets out of work before me so he takes care of all our dinners.  By the time I get home from work, he has dinner (almost) on the table.  However, with him not feeling well this past week, I have assumed this responsibility.  Now don't get me wrong, I know how to cook and did it for many years.  However, Ed LOVES to cook and create dishes and meals, so I have allowed him this pleasure!  And it's my job to do the dishes--it works!

But now I am trying to plan out meals, get out of work in time to make dinner (at a reasonable hour), and figure out how Dan can help as well.  But last night, just as I got home, Mike had called saying he was coming over with the Polish food for dinner.  So thank you Mike!  That was so thoughtful and generous of you!  We so appreciate it!!

And as an update on Ed's treatment, we're not sure what will happen today.  Ed has a 9:30 appointment, but yesterday afternoon his doctor's office called to say that the insurance company has not yet pre-approved the treatment.  So if it's not pre-approved by his appointment this morning, we will have to delay the infusion.  As much as I could be annoyed by this, I'm not because I at least had the forethought to have them check on this so that we would not end up having unpaid claims looming over our head.  I just hope it's resolved by this morning.  We'll see though and I'll keep you posted!

Decision on Treatment

So Ed called Dr. Bowers office yesterday and spoke to his oncology nurse, Shayne, about the possible treatments.  Ed was leaning towards the Oxaliplatent but wanted to discuss it with Shayne first and also confirm the insurance will cover it.  Shayne is confirming insurance coverage, but based on her observation of patients she administers it to, most manage the neuropathy successfully.  So Ed's scheduled for treatment Wednesday morning.  I will probably go with him so I can be with him when he meets with Dr. Bowers and then drive him home since we don't know what his reaction will be to this new treatment.  We are holding off on the Erbutix for now (that's the one that causes a rash in 90% of the patients).

I do need to remember to stop at the store to get some gloves to keep by the frig since Ed can't take anything out of the frig without wearing these.  He'll also only be able to drink room-temperature fluids, so we'll need to be sure there are some beverages left on the counter for him.

In the meantime, Ed continues to be very fatigued and doesn't move all day.  He basically sits in his recliner or goes back to bed and his movement is slow and he has no energy.  He is either cold or sweaty.  He's starting to at least eat again, at least somewhat, which he wasn't doing last week since his stomach was bothering him.  I've read about "cancer-related fatigue" but I'm not sure if it's this, if he's slightly anemic (but he has been taking iron supplements), or if it's depression.  We'll see if it improves once he begins treatment again but this is the first time in 2.5 years where he has felt this bad and he's missed work for the the past week.

Hopefully once he begins treatment again, he'll begin to feel better.  We'll see and I'll keep you posted.

God grant me strength and patience!

Results of CT Scan

Today we met with Dr. Bowers to get the results of Ed's CT scan.  As expected the tumors have grown--but we (unofficially) already knew this.  Words like "slightly larger" and "very slightly larger" were used.  With the liver, "a definite significant progression of disease".  Nodes that previously measured 14x9mm now measures 24x15mm.  A 37x42mm lesion previously measured 26x33mm.  Definite progression of metastatic adenopathy; definite progression of metastatic disease to the liver.

Which all of this means is time to hit this darn cancer and the tumors with another mix of chemotheraphy.  Dr. Bowers gave us several options which we will weigh over the weekend and get back to him with a decision on Monday.

Dr. Bowers recommends continuing the Xeloda but adding Oxaliplatin (since we can't use the Avastin due to possible kidney damage).  Unfortunately, the Oxaliplatin side effects are neuropathy and cold sensitivity--serious stuff that can't be taken lightly.  He also recommended either adding now or in the near future Cetuximab (Erbitux) which has the side effect of a rash.  Ed could choose to try the Irinotecean again, but this wasn't Dr. Bowers first choice.

So time to do more research and make some decisions.  The neuropathy associated with Oxaliplatin is kinda scary with possible permanent numbness and having to deal with the cold sensitivity is troubling (use gloves to get things out of the frig, can only drink things at room temperature, even need to be careful when going from warm/hot air to A/C).

Damn this disease...

Feeling Like Crap

Although Ed had a great time at the Graduation party on Sunday, he was pretty wiped out on Monday and spent the majority of the day on the couch.  He continues to have no energy, doesn't feel good, and has body aches.  He had his CT scan this morning and we'll meet with Dr. Bowers Thursday at 11:15.  Hopefully we'll get some answers about what's going on and can determine next steps.  I'll try to post an update Thursday night.  Until then...

Party Time!

Graduation Party time that is!  And what a busy but great weekend we had!!  Dan had left Thursday night for NYC for an interview on Friday.  So he wasn't home until Saturday night since him and Cassie stopped at Matt's graduation party in CT on the way home.  Nate and Cassie then stayed with us until Monday which was a treat.

The party was on Sunday and it was a sunny, hot day and we all had a great time.  We're thankful to Cathy for her tents and Grover for his tables which enables folks to be outside in the beautiful weather but stay cool in the shade.  We had a great turnout and it appears everyone had a good time and enjoyed the food.  I thank everyone who contributed appetizers and/or desserts--thank you all!

Doctor's Appointment

Wednesday, May 23rd, Ed had his biweekly doctor's appointment.  Over the past week or so he's been randomly telling me "something's not right" and he feels his liver is enlarged.  At his appointment on Wednesday, Dr. B. measured the liver and didn't record any change.  The results of the bloodwork weren't ready when Dr. B met with Ed, so he sent Ed on his way and said he'd call him.  Well an hour or so later, Dr. B. called Ed both on his cell phone and left a message at home.  He said the bloodwork was showing that something was up with the liver and told Ed not to take the Xeloda as regularly scheduled, but instead call to get a CT scan as soon as possible.  So Ed now has a CT scan scheduled for Wednesday, May 30th.  Until we get the results of that, we won't really know what is going on.  However, Ed is struggling with having no energy and also an odd sore shoulder.  I'm sure part of having no energy is the worry about what is going on.  The sore shoulder is just bizarre...he'll be fine all day and then will sit for 15 mins and all of a sudden his shoulder is causing him pain.  He's also not sleeping well, partly due to the shoulder pain, so that isn't helping either.

So for now we wait.  This weekend we have Dan's graduation party so all we can do is enjoy the weekend.  There's nothing we can do until we know what the CT scan is showing.  Of course, we try to remind ourselves that we've been "lucky" and for the past 2 years, we've basically been living with his cancer and not having to deal with the white elephant in the room.  Ed not feeling well, though, is reminding us that this is a deadly disease that is in his body and at some point, the cancer will begin to win this battle.  However, for 2.5 years Ed has been on the same chemotherapy mix and so we have certainly not used up all our options yet.  Of course, some days are easier than others to focus on the positives versus the negatives.  Easier for me to say than for Ed to do.  I'll keep you posted...

Graduation Day

Today is the big event--after 5.5 years of studies, Dan has officially received his Bachelors of Science/Masters of Architecture!  We were limited to 6 tickets so it was me, Ed, Cassie (Dan's girlfried), my mother, and my sisters Marion and Cathy.  After the ceremony we had lunch at Leo's in Bristol--one of the best restaurants in town.  A fitting way to complete this chapter of our lives and our last day in Bristol!

Madeline Albright was the Commencement Speaker

Dan and Nate

Cassie and Dan

Ed, Dan, and Me

Dan and Grandma

Auntie Mar-Mar, Dan, and Auntie Cate

Colin, Nate, and Dan

Dan's Hooding Ceremony

 

Today marks the beginning of Dan's week-long celebration of his RWU graduation.  Today he headed back to Bristol and will hang with his former roommates Nate and Matt for the week's celebration.  All three of them are Arch majors and all three will be receiving their Bachelor of Science/Master of Architecture on Saturday.  Tonight is the Hooding Ceremony, Wednesday night is a President's Dinner, Thursday is rehearsal and a BBQ lunch, Friday is dinner with Nate's family and Saturday is the big event--GRADUATION!

Both Ed and I also drove out today with my sister Theresa and my mother to attend the Hooding Ceremony.  We had a nice (late) lunch at Aidan's in Bristol before attending the ceremony.

Theresa's first visit to Bristol/RWU.  Mt. Hope Bridge in the background.

Grandma and Dan

Auntie Theresa and Dan

Dean White and Ed

Dean White and Dan

Me, Dan, and Ed

Our Graduate!

Happy Birthday Dan

Today, May 12th, marks Dan's 24th birthday!  Where does the time go?  So glad we were able to celebrate with him this year.  For the previous 5 years he was away at college and if we went to visit him, our celebration was limited to a quick lunch or dinner as he was usually in the middle of finals for studio.

A new golf bag as a birthday gift.  Needless to say, Ed picked this out!

His birthday treat was homemade ice cream sandwiches using homemade choc chip cookies.
And some banana blueberry muffins as well.

In other news, Dan has received a couple calls for interviews.  He had one this past Friday in Springfield, MA, and he has another on May 25 in NYC.  Although he's only semi-interested in the job he interviewed for on Friday, the interviewing is good experience and he's not ruling anything out at this point.  Feels good to at least get some calls for interviews!

No Change

There was no change at Ed's doctors appointment today.  There is still protein in his urine so he will continue with only taking the Xeloda and holding off on the Avastin until lab work looks better.  Next appointment is in two weeks on May 23rd.  I'll keep you posted!

Welcome May

I love May.  I guess it's because it means Spring has arrived.  Of course, it is also the month in which Dan was born and there's Mother's Day as well...so it's always a special time of year.  So bright and sunny and a happy time.

Not a lot of news since my last post.  Ed is still doing fine and has another doctor's appointment this week, so hopefully his tests look good.  He does continue to be tired and just does not have the energy that he once had.  Last week some friends came over to help him redo the roof on our back porch.  We are so thankful for their help and now there are no leaks when it rains!

One of the two skylights installed as part of redoing the porch roof.

Dan is still looking for work and applying for a number of jobs, but so far, no bites.  On one hand, it gives him the flexibility he needs for attending upcoming graduation-related events and he's able to play some golf as well.  But it can be discouraging, so if you know of any architects, let us know so we can pass Dan's name on.  I truly believe it will only be word-of-mouth that will get his resume to rise to the top of the pile.

For me, April meant dealing with two annoying issues.  One was a broken tooth.  I bit down one evening and had sharp pain and made a note to call my dentist.  However, a couple days later it was feeling better, so I ignored it (I wonder where I get that from--Mom!).  Well, Friday evening (yes, after the dentist office was closed for the weekend), the tooth broke.  Saw my dentist on Monday and ended up getting a crown.  I am surely thankful I have dental insurance!  Also, last month, several days after my 5K, my left hip began to bother me.  Not sure why and I never had any problems beforehand.  So I tried ignoring it--which didn't work; tried working through it--which didn't work; and then I took a week and did no running or walking and just rested it--and that seemed to do the trick!  I'm back on the treadmill and have starting small amounts of running (yesterday I did 15 mins).  I was going to do another 5K on May 12th, but it was postponed for some unknown reason--which was probably good because I probably would have tried running it when I wasn't really ready!

In other news, Ed and Dan went to a Red Sox game yesterday. The tickets were a Christmas gift from me to the both of them.  Unfortuntely the Red Sox lost, but the weather stayed nice (no rain) and they really liked their seats.

A view from their seats

So, all-in-all, a good month.  As I said, I do love the month of May!

My Lily-of-the-Valleys are blooming early.  I've loved these flowers since I was a kid and remember them growing near the side of the house on Granville Road!

A not-great picture of a small hawk on our back porch.  Hope it doesn't try to eat all the small birds around the house!

Making Adjustments

Making adjustments...or as they say, managing the side effects.  That's what we're doing and two weeks ago another side effect was identified and that is protein in Ed's urine.  (Wow...who ever thought I'd be posting on a blog about urine....crazy, but I am!)  Last week Dr. Bower had Ed do a 24-hour urine test and this week we found that 24-hour test also showed a high level of protein.  This is one of the "serious" side effects of Avastin.  So on Wednesday, we met with Dr. Bower and he informed us that we needed to suspend the use of Avastin until the protein levels go down.

Of course we worried that by suspending the Avastin, the tumors may grow again.  However, there is no choice if we want to avoid permanent kidney damage.  Ed will continue on the Xeloda which as Dr. Bowers explained is the primary chemotheraphy drug. The Avastin and the Irinotecean (that we stopped earlier this year) supplement the Xeloda.  So Ed will continue to go in every two weeks to get his blood levels and urine checked, but no infusions for now (since the Xeloda is an oral drug).

A possible bonus?  Well, the Avastin is also the cause of Ed's high blood pressure and even though Dr. Bowers upped the dosage of his blood pressure medicine earlier this year, he did so again this week since Ed's blood pressure continues to be high.  So by suspending the Avastin for a bit we hope this also helps with the hypertension.

Time will tell...

Rainy Sunday

Today, April 22nd, is a rainy Sunday and we need the rain so bad!  It has been so dry and so I was all set to settle in today and stay home on this lazy, rainy day.  Dan and I spent a chunk of time today creating and mailing invitations to his graduation party.  I cannot believe that graduation is only 4 weeks away!  Somehow that snuck up on us. 

Last weekend we finally met Cassie's parents--John and Peggy.  Their daughter Bridget, who goes to Holy Cross, had a track meet at UMass and her parents and Cassie drove up to see her.  Since they were right in our backyard, it was a great opportunity to meet them.  Ed and I went over and spent a few hours watching the track meet.  We saw Bridget compete in a couple events.  It was fun to see the track meet and even nicer to meet John and Peggy--who we really enjoyed!  An added bonus was that it was a beautiful day to be outside, enjoying the weather, and not having to work in the yard.

After the track meet, we all went out to dinner (unfortunately Bridget couldn't join us).  We decided on Judie's since we felt we needed to pick a unique restaurant special to Amherst.  Of course I had to order popovers with apple butter for them to try--which everyone loved!  We all had a great dinner, good conversation, and an enjoyable time!  We can't wait to see them again!  We got an invite to go visit them this summer on Long Island, so maybe we can make that happen!  If not, I hope they can stop by the next time they are in Mass visiting one of their daughters!

Bridget doing the long jump

Ed cooking on our new gas grill (my Pearson 30th anniv gift)

I have NO clue what they're planning to do with these!

Invitations and Commencement tickets to Dan's RWU graduation!!

Lilacs bloomed VERY early this year.  Ed picked them before the heavy rains destroyed them.

Welcome April

The first week of April Shumway & Sons Tree and Landscaping was here to cleanup what was leftover from the October snowstorm.  They trimmed away branches that were broken and hanging high up in trees and also took down several of the heavily damaged trees.  They also did Kay's next door as well.  Glad to get those hanging branches cleaned up and not worry about them falling during a strong wind!

Of course my big news for April was running my first 5K on April 7th!  I can typically do 3 miles in about 33-34 minutes but there were a couple big hills so my goal was to finish in under 35 mins.  Wasn't I surprised when I crossed the finish line in 32:16!

Warming up before the race

Right after finishing!

Post race

Easter was a nice day with family and friends and nice weather!  The entire family was together at my mother's for dinner and we were joined by Momma Jean, Papa, Maureen, and Roger!  A great day!!

Every holiday I try to get Dan and Gramma to pose for a picture!
These two love each other so much!

Early Spring!

Just some images to show our enjoyment of the early spring/summer weather in March!

Herb pot from Cassie with Basil, Cilantro, and Parsley growing.

On Sunday, March 18th, it was a beautiful 70+ degrees so Dan and I decided to go for a bike ride.  Here I am all ready to go!

Dan waiting for me (had to include this cuz I don't have any other pics of Dan on his bike!)

We road from home to Damon Road in Northampton.  This is the entrance of the bike trail on Damon Road.

A shot of the Connecticut River and the Coolidge Bridge from the bike trail.  Our ride was a total of 21.5 miles!!

Ed fired up the grill that afternoon!

On Wednesday, 3/21, Ed and Dan played 9 holes at Cherry Hill Golf Course.  This is Ed (in case you couldn't tell).

Happy St. Patty's Day

Yes, yesterday was officially St. Patrick's Day.  However, today is the Holyoke Parade and we're cooking our corned beef and cabbage dinner today--so we're extending the celebration an extra day.

Already baked up some Irish Soda Bread--a new recipe--fresh out of the oven.  We'll see how it tastes.

In other news, the initial RWU graduation list for May has been released and look who's there!

(Click on the image to view it larger.)

He did receive his final grade for studio and so he is now 100% officially done!!  Looking forward to a week of activity/celebrations in May.

Happy Spring everyone!

Latest CT Results

Ed had a CT scan this past Wednesday.  He then had an appointment with Dr. B on Thursday for the results and his next treatment.  Good news is that the tumors have once again shrunk and so Ed and Dr. B have agreed to eliminate the Irinotecan for the next 3 months (until the next CT scan).

Needless to say, Ed was quite pleased and in fact went into the appointment hoping this would be the result, so I'm glad he wasn't disappointed.  As you may recall, he was off the Irinotecan for about a year-and-a-half before they had to start it again late last summer.  It is the Irinotecan that caused him to lose his hair and feel "less well" after treatment.  So Ed is thrilled to get a break from this chemo drug for a bit plus it shortens his biweekly treatments by about 1-2 hours.

In fact, feeling so good about this that he's even scheduled his next few treatments on Wednesdays so he can go directly to golf afterwards.

Happy Spring!

Saturdays & Mini Vacations

I love Saturdays and weekends...what's not to like?  I can sleep late, take my time having a couple cups of coffee, and move at a much slower pace.

Earlier this week, we all took a couple days off of work and headed to the casinos in CT.  Cassie (Dan's girlfriend) also joined us.  Originally she had planned time off of work, but since she has since been laid off, she actually was able to coordinate this mini trip with some job interviews in RI.  So Cassie took the ferry from Long Island and then drove the 15-20 mins to Mohegan Sun and we met there mid-day Tuesday.  This was Cassie's first time at a casino and only Dan's second time (if you don't count the time we went when he was under 21 so all he could do was look).

Anyhow, we had a good time.  Spent a few hours at Mohegan, grabbed some lunch, and then headed over to Foxwoods around 4 or 5 PM.  Checked into the Grand Pequot Tower and then spent the rest of Tuesday and Wednesday at Foxwoods.  We all had a good time Tuesday night since we all seemed to be making back the money we were putting in (by the end of the night I was only down $5).  So we weren't winning big, but we also weren't losing big either.

Wednesday we weren't as lucky and we all ended up losing more than we were winning.  At the MGM casino, we ran into a guy who won $10,000 on a $1 slot machine.  An hour later, right around the corner, there was another guy who won $12,000 on a $1 slot.  Of course, this 2nd guy had already dropped $800 in an earlier slot machine.  Would have been nice to win something like that, but we all had fun on our penny slots (Ed played a couple $1 slots...the rest of us were too cheap!).

Left Foxwoods Wednesday late afternoon after grabbing at late lunch at Fuddruckers (gotta love that name!)--we headed home; Cassie headed to RI.  After her interviews on Thursday, she drove here and is now spending the weekend with us (actually, Dan...).  No big plans for the weekend...just hanging out, going to Irish Night at the church, etc.  But as I said when I started this post, I enjoy the weekends where we can just hang out and enjoy a slower pace of life.

Next week Ed has his next CT scan.  I'll be sure to report in after that...  In the meantime, stay warm, don't forget to turn your clocks forward tonight, and look forward to spring!

Dan & Cassie at Dinner (California Pizza)

Me & Ed at Dinner (impossible to get him to pose nicely for a picture)

See...won't just pose nicely for me!

Me at Mohegan Sun

Cassie & Dan at Mohegan

View from our room at Foxwood's Grand Pequot Tower.



Grand Pequot Tower

Dan (on stairs) and Cassie (on escalator) heading towards Foxwoods' MGM Grand Casino.