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!

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!