Wednesday, October 31, 2012

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




Saturday, September 29, 2012

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!

Sunday, September 9, 2012

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!

Thursday, August 30, 2012

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.

Sunday, August 12, 2012

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!!

Saturday, July 28, 2012

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!




Saturday, June 30, 2012

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.

Friday, June 22, 2012

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...

Saturday, June 16, 2012

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...

Tuesday, June 12, 2012

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....

Saturday, June 9, 2012

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!

Friday, June 8, 2012

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...

Thursday, June 7, 2012

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...

Wednesday, June 6, 2012

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!

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!

Tuesday, June 5, 2012

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!

Thursday, May 31, 2012

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...

Wednesday, May 30, 2012

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...

Monday, May 28, 2012

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!





Thursday, May 24, 2012

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...

Saturday, May 19, 2012

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



Tuesday, May 15, 2012

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!

Saturday, May 12, 2012

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!

Wednesday, May 9, 2012

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!

Sunday, May 6, 2012

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!

My Story

Lately I find myself moving through the days, being with others, laughing, and living life. Days pass quickly and grief, sadness, and feelin...