Monday Feb. 28, 2011 4:45 PM

Just looked at the "stats" page on my dashboard for managing this blog.  There have been 2,187 page views so far.  I can't wait to tell Ed when he wakes up.....that just might overshadow "The Factor" today.  It's amazing and I can only imagine how energized that will make him feel!  

Monday 2/28/11 3:40 PM

Finally have a chance to get on-line today.  Busy morning at the office (Monday's are like that) and then back to the hospital in time for the doctor visits.  Dr. Menco (oncologist) came by and reviewed the weekend challenges.  Things have settled down today since they've added several symptom-relief meds.  He feels that the problems Ed had over the weekend are mostly due to the lymphoma being in the walls of the intestines and it's aggressive nature has just ramped up the symptoms Ed has been experiencing all along with this situation, and a small part of it is also related to the chemo.  He explained that the first few doses of chemo are the roughest because there are so many cancer cells to kill and the body has to process all that waste material, so the organs and body are working extra hard to do that, in addition to reacting to the chemicals themselves.  He really feels that once the lymphoma is under control, the intestines will hopefully stop reacting so violently as well.  He said he definitely wants Ed to be here in the hospital for several more days - and Ed finally agrees that he doesn't want to go home like this.  Again, the issue of not having home meds to substitute for some of the things they are giving him to keep him comfortable is a consideration.  Dr. Menco wants him off of some of them before we go home because the management of his symptoms is more difficult outside the hospital environment.  Ed agrees, even though he'd really like to go home.

He has been sleeping most of the day, which is a good thing.  He really hasn't slept much at all since arriving 2 weeks ago and it was really beginning to take a toll.  Sleep is good for him right now and they will continue to give him enough pain meds and ativan to allow him to sleep for a couple of more days.  We need to get him rested for the next chemo round which will be 2 weeks from tomorrow.  It really has been good to see him resting comfortably today.  I'm sure each of you can imagine how hard it is to see someone you love struggling so much and feeling so helpless. 

He's been too sleepy to enjoy the comments today, but I read them and will share them with him when he's more awake.  Just a quick note... if you are not registered as a follower, can you please put your full name on your comments - we know lots of Mikes and Toms etc. and Ed asks me who the comments are from and it makes it easier if you have it in the text so I don't have to try and find the follower link.  Thanks.  Also, if you text me or Ed, put your name at the end too because sometimes the message just comes up with a phone number and he doesn't know who the text is from.  Thanks.  I'll try and keep updating his phone when new numbers come in if I can put a name with it. 

No news on the wedding date yet - many of you are asking.  We have an attorney service trying to pick up the application docs at the courthouse tomorrow in Ventura and we're working on jumping through the silly hoops Ventura County has in place.  Stay tuned...... Ed says he doesn't think our backyard is big enough ........ he feels very loved and is actually looking forward to making it really special.  He's never stopped amazing me.........

He must be psychic....just as I typed that, his eyes opened, he looked at the clock (it's 4:00 PM  now)and he said "Don't forget to wake me at 5 PM for Bill O'Reilly".  Honestly, it's an unbelievable love affair.....I wonder if Bill would come to the wedding.....if anyone out there has any pull at FOX, now is your chance to call in a favor.......I'm sure there's more than a case of Coors Light in it for anyone who could pull that off for Ed.  I just might have to work on at least getting an on-air mention or something.......putting that at the top of the "to-do" list.  Apparently, there's a "no-spin zone" in my future too....

I don't anticipate any more news for today....just want him to continue to doze peacefully and let his body rest and rejuvenate.  He deserves it and needs it.  If anything changes, I'll post an update right away.  Otherwise, I'll definitely be back tomorrow.

Liz

Sunday, February 27, 2011 10:30 PM J

Just a quick evening update. We watched part of the the Academy Awards with Aaron and Ryan   Ed is feeling a little better, but completely exhausted from the day. About 8 PM, the Schauweckerfamily stopped by for a few minutes - Marie, John & Kathy, Tom and John's daughter Melanie. We had a nice short visit - Ed was fading pretty fast and looking forward to going to sleep.  Wemt for a quick walk down stairs to stretch his legs since he hadn't really been out of bed for 2 days.  He felt pretty wiped out when he got back.  Hopefully the drugs will work through the night and he'll rest comfortably. More comments todday - Ed enjoyed them all.  Thanks.

Sunday Feb. 27, 2011 1:30 PM

Well that episode this morning hit pretty hard and pretty fast.  But the timing was good in the sense that both his GI doctor and the on-call oncologist were here at the same time to see it first hand. They both had immediate suggestions and he's gotten an increased dose of the long-acting anti-nausea and an injection of an immediate short term one, as well as pain meds and ativan which they feel will relax him some and help him rest more.  The GI doc really feels that an NG tube will be helpful to suction out the gastric juices in his stomach which may be contributing to the vomiting situation.  It's just a thin tube through his nose into his stomach, and Ed's not crazy about the idea, but I think he's willing to try anything to avoid the violent vomiting.   He's sleeping quite soundly right now - actually snoring, which means sound sleep for him.  He has been having a hard time turning off the thinking and getting much rest.  The doctors are seeing it too, and hence the ativan.  I think it really will help him relax, which is so important.  You all know Ed ..... he worries and thinks a lot all the time ..... almost always about everyone else and about business .... and lately about the world with all that's going on in Egypt, etc.  He watches FOX news every day and likes to stay politically up to date and world-affairs current, but honestly sometimes I think it agitates him too much these past 2 weeks.  It's kind of a double-edged sword .... it's good to have things to keep his mind off of feeling lousy.....but it's not helpful if it keeps him from getting any rest.  I've tried to occupy him by even offering to let him teach me how to play poker (he knows I'm lousy at cards....remember our cribbage game at the lake, Ryan & Aaron???)  but he'd really like to play strip poker (I think with some of the nurses - imagine that!), but today he has a male nursed named Ed - yes, I'm serious..... so we've tabled that activity for a later time.

I'm going to log off now and get a little bit of work done while he's sleeping - thank goodness for computers and our amazing Lloyd's Plumbing I.T.guy.  He has set us up with a laptop that links me to the office network so I can keep up with everything and reassure Ed on a daily basis of what's going on at the office.  I can even SEE everyone at the office with the remote camera log-in and when I have a chance, I will get the webcam up so Ed can say hi to the guys at the shop.  This amazing technology allows me to be here close to Ed and yet keep up with my work at the shop.  What a gift!

Thanks for the updated comments..... will read more to him this afternoon when he wakes up.  I'm hoping he'll feel like watching the Academy Awards tonight.  Hope you enjoy them.  I'll send an update later on.

Sunday 10:45 AM February 27, 2011

Good morning.  I didn't get a chance to post last night so I'm sure you are all anxious for an update.  After the pretty brutal day yesterday, the doctors were able to adjust and add some medications to help ease the intensity of the nausea, vomiting and diarrhea.  By about 6:00, Ed was getting some relief and starting to feel better.  But the day totally wiped him out and we just dozed and watched a little TV.  He was sleeping pretty good by 8:00.  Leo and Georgette came by and met me in the lobby with a good burger and some fries and plenty of hugs and friendship.  I was ready for that!  Thank you.  The cafeteria here is open such short windows of time, I usually miss the meals as I try to wait until Ed's sleeping or resting comfortably before I leave for a few minutes, so the timing is not always in sync.

Ed felt better this morning and got up and took a long shower which always feels good.  Ryan is here and we have the window open a little for some fresh air and we're watching Man vs.Wild on TV, where the guy is eating rattlesnake and bugs - Ed says the protein drink and jello here suddenly seem a lot tastier than he remembers when he ate them last..... Hopefully he'll be able to try them again soon.

He's still not feeling up to visitors yet but loves all the posting comments and cards.  We're not sure how much longer he'll be here at Los Robles, so if you want to send a card, you can mail it to our home and my son brings the mail up every day.  Our address is 2015 Calle Yucca, Thousand Oaks, CA 91360.

Also, a couple of people told me they were having trouble posting a comment to the blog.  I think if you click on the word "comments" at the bottom of the blog updates, it takes you to the comments already posted and at the bottom of those it has a spot to post a new comment.  I don't believe you have to be signed in as a "follower" in order to post a comment but I'm not absolutely sure about that.   I'm new at this blogging stuff myself so I apologize for not being more helpful.

Okay, well, it's 11:10 and the nausea and vomiting are back.  Dr. Ashouri just came in and he's ordering some atrapine for his stomach cramps to see if we can get today's episode under control before it turns into a repeat of yesterday.  I'll log off now so I can sit quietly with him.  I'll let you know how he's doing later.

11:30 AM Saturday, Feb. 26, 2011

Just a quick note -- we had a relatively okay night - after about 1:30 AM we had 2 periods of an hour and half or so where we were able to sleep laying together and he was comfortable.   About 5:30 this morning, he started feeling pretty crummy again and he's been pretty sick since then.  All the doctors came this morning on their rounds and they've ordered some additional anti-nausea and diarrhea meds that are now in a constant IV drip instead of as needed every 4-6 hours.  Hopefully that will help within a few hours and turn things around.  No phone calls or visitors today he says - he just wants to lay under the covers and escape for a while.  He's also developed some mouth sores which the oncologist said are part of the chemo side-effects and they are getting meds for that as well.  So for all of you friends and family out there (mostly men, believe it or not) who keep asking me to give him a big kiss on the lips.....I'll be taking names and keeping a list for a few days, then I'll get you all caught up.  We are expecting this phase to get much better by the early part of the week and we're targeting mid-week to get him home.  That will be wonderful!

I'll update you later today.  Thanks for checking in. 

6:30 PM Friday 2-25-11

Ed had a quiet afternoon of just dozing and watching TV.  Didn't feel like doing much of anything - just felt kind of tired and "crappy" as he told the doctor.  Nothng specific in terms of pain or anything, just kind of fatigued and a little woozy, etc.  He says sorry if you called today and he didn't answer or hasn't returned calls.  He just didn't feel like it.  Thanks for understanding.  The next couple of days should be quiet - nothing scheduled test wise or procedure wise.  He just needs to rest and see how he feels the next few days to get ready to go home.  They are working on scheduling the home care services needed and that stuff all grinds to a halt on the weekends because insurance companies are closed, so we'll pick it up again on Monday.  Hopefully he'll feel more energy the next couple of days, but we just have to wait and see.  The chemo is strong and since it's his first dose, we don't know how his body will react and the doctor says everyting he's feeling so far is expected.  If he feels like visitors, I'll definitely let you all know - maybe he'll feel like having an Academy Awards party in his room on Sunday!   Thanks again for the prayers and thoughts and cards and flowers and balloons.  It's always a pick-me-up for him and the volunteers are very good about bringing in his deliveries.  I'm going to run home and take a few pics of the bathroom progress and then head back to the hospital.   Ed sends his love and thank yous to everyone.