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.

Friday AM February 25, 2011 11:50 AM

Ed just got back from the surgery this morning.  The portacath is in on his right side next to the clavical just under the skin.  It's a small triangle shape about the size of a 50 cent piece.    All went well and he's just resting with an ice pack on it.  Later they will put in the needle access which is good for 7 days and allows them access for everything in and out.  Then every week they just change the pick needle and he doesn't have to get poked for blood and they can use it for the TPN, the chemo, etc. It can remain in for a year or more with monthly maintenance of just flushing it.  He's feeling okay - had a pretty good night of rest with a couple of 2 hour chunks between all the interruptions. 

Nurse just told us that his labs all look good today and his white cell count is good and responded well to the nupagen after chemo, so he may not need another nupagen injection today.  That one they have to give in his belly, so it would be nice to have one less poke. 

He's watching FOX news and resting.  I'll check in with you all later this afternoon.

Thursday 2-24-11 2:30 PM

Not much new today.  Last night was pretty tough, but this morning was somewhat better.  The waves of nausea are still present but he did feel well enough an hour ago to get up and shower.  We had planned to go for a walk around the floor, but he felt light-headed so he's sleeping now.  I think I have finally convinced him to take the zofran (anti-nausea) injection and the pain meds as often as he can have them instead of waiting until he's in a terrible state before asking.  The nurses are talking to him as well and educating him about pain management and such, explaining that it's easier and more effective to control if you keep a baseline going .  That makes it easier to bring the pain or nausea down rather than having to pull him completely out of the dirt each time.  I think after last night he's becoming convinced.  It's going to take a little doing to break through that tough-guy shell and convince Superman to take his cape off once in a while. 

No procedures today.  Just waiting for the surgeon to come in later and discuss the portacath procedure scheduled for tomorrow.   Ed told me he isn't up for visitors today and I know some of you are anxious to stop by.  It's just a day by day, even hour by hour thing right now until we get used to what to expect and how to manage it.  More beautiful flowers and plants today - thank you so much.  He really does love them.  And friends dropping off cards and photo albums - he has so so much enjoyed looking at pics of good times and fun memories.  All of those things make him smile and know how much he is loved.

You wouldn't believe what is going on at the house in anticipation of his return home - the master bath is being completely remodeled and so many people are pitching in and working late into the night and giving their time to make it happen just like in "Extreme Home Makeover".  I'm expecting Ty Pennington to roll up in Ed's motorhome any minute!  Thanks to everyone who is working, helping and facilitating those who are working and helping.   Ed only knows part of what is going on.  I think he'll be surprised.  It's amazing.  Thank you all so much.  I think I'm going to have to learn that phrase in more languages so you won't get tired of hearing it.  Plain old "thank you" doesn't nearly seem to cover it. 

Ed has really enjoyed hearing the comments that have been posted, so feel free to keep those coming.  I'll check in again later this evening.

Hi from Ed and love to you all.
Liz

2-23-11 9 PM

Getting ready to go to sleep.  Ed started to feel pretty lousy around 5:15 and felt bad for 2 hours.  Not as bad as yesterday, but the waves of nausea are not fun.  Slept a little and that helps a lot.  He's pretty okay now.  Hoping for a restful and calm night.  He had a few bites of a lemon icee and that tasted good to him.  Also had a little bit of jello tonight.   That's progress.  He can't wait to eat again - craving a pepperoni pizza and looking forward to our plans to hit a bunch of the restaurants they show on "Diners, Drive-Ins and Dives" on the food channel. 

Talk to you tomorrow.

2/23/11 4:15 PM

It's 4 PM on Wednesday.  I couldn't get to the blog any sooner today.  Ed's Mom and sister Sandy and brother-in-law Mike came out to spend some time and Ed would rather I spend time with him while he's awake and not be on the computer.  Thanks for understanding that.  Ed had a good night - no real issues with the chemo last evening or during the night except a very metallic taste in his mouth and everything kind of smells strongly metallic.  The doctor says that's common.  He slept pretty good (they wake him up a lot to check on stuff, like whether he's sleeping well (crazy) etc.) and he felt good this morning.  A couple of little waves of nausea and feeling a little tired and slow, but overall, much better than what you hear about and imagine it could be and so much better in general than he felt yesterday even before they started.

The oncologist came back with the bone marrow results today.  Not what we hoped. The bone marrow has lymphoma cells in it, but Dr. Menco says it doesn't affect the treatment plan in the short term - we will still go on as planned - it will just mean we need to consult further with City of Hope to help tackle that piece of the puzzle.  With this type of cancer, it is relatively common for this involvement to be present at diagnosis and they are well experienced with treatments to approach it.  It certainly isn't the news we were hoping for, but we'll deal with it at the appropriate time. 

The surgery to put in the portacath is scheduled for Friday morning with the surgeon we like - Dr. Matrisciano - so Ed will be here for a few more days, probably through the weekend.  They are also starting daily injections of nupagen to support his white blood cell count.  That goes for 8 days, so they can do that while he's here.    Ed will have a 3 week rest from chemo now and so we're working to get him set up to spend most of that time at home.  Hopefully it won't be more than a couple of days after the surgery on Friday before we can arrange for the TPN to be set up at home and get him eating at least a little bit of something so he can go home.  He'd certainly like to go home, like YESTERDAY! 

Ed says hi and thank you for all the beautiful cards and flowers and balloons.  They are all gorgeous and brighten his room up so much.  He has a great private room with a view out the window that allows us to see the sunsets and flags at the front of the hospital.  We have walked down to the atrium a couple of times, but it's been pretty windy and cool to spend much time there.

I'm sure most of you know that we're getting married and we've been talking about the when and where.  In keeping with Ed's loving way of including everyone, (and using any excuse to have a great party) we're working on the plan to include everyone who'd like to be included.  We're thinking of our backyard as the venue, so Ed's working on getting bleachers helicoptered in. (He said to tell you all that - I think he's just kidding??)  As soon as we know when he can come home, we'll pick a date that will be very soon (Ed says we've probably waited long enough to sleep together).  We really appreciate the love and support and we're excited about getting married. 

I will log off now for a bit - we have a sacred hour in our home from 5 to 6 PM - Ed has a standing date with Bill O'Reilly.  And NOTHING..... not even chemo is going to derail that love affair. 

Later everyone.

2-22-11 5:00 PM

Made it through the first chemo.  They finished about a half hour ago.  Ed feels much better than he did earlier today.  We're going to try and take a nap.  It's been a long day.   He says he is not up for visitors tonight since we don't know what to expect in the next few hours and it was a rough day earlier.  Thanks for understanding.  I'll check in later and let you know how he's doing before i go to bed.  Thank you Tonderum/Hanks families for the beautiful bromeliad.  It's gorgeous.  Liz

2/22/11 2:45 PM

Ed says to say "this is the beginning of something new."  They finally got the chemo started at about 2:15 - he had a rough morning and the picc line they were planning to use for the chemo is blocked so they had to unhook the TPN to use that line for the chemo.  When the chemo is finished today, they will re-connect the TPN.  Dr. Menco (the oncologist)  is getting Ed on the schedule (hopefully for tomorrow) for the  surgeon to put a portacath in Ed's chest so we won't have continued issues with the picc lines.  This is very common - the portacath is a somewhat "sturdier" means of getting all the stuff he needs into him and requires less maintenance than the picc line.  Dr. Menco doesn't feel there is any problem with doing this procedure - Ed did very well during the surgery last Thursday, so we'll just get it done.  I'll let you know when I have confirmation of that.

I have read all your messages to Ed just now and we're watching "Let's Make a Deal" on TV. His back is tender from the bone marrow test and he has a headache, so he's consented to some pain meds.  The morning bout of vomiting and diarrhea seems to have passed in the last half hour and he's feeling much more comfortable.  He sends a "hi" and says this sucks.  He'd rather be out riding the motorcycle - it's a beautiful day.  We did go downstairs and sat in the outdoor atrium in the sun for a few minutes this morning.  He wants to take the motorhome to the beach as soon as he is allowed to go home.  Dr. Menco says he'll try to help us make that happen once we get everything set up.  Ed wants to start planning a party.........

More later.  I'm missing "Brandi" wrestle with the agonizing decision of whether to trade her trip to the Caribbean for a chance at door number 3.......Ed wants me to lay on the bed and watch this riveting show with him.  Love to all.  Liz

2-22-11 1:15 PM

We just are starting the pre-chemo meds for nausea, etc. in the past 10 minutes.    Ed has been pretty sick for the past couple of hours so they waited to give him a chance to get a little more comfortable.  I'll keep you posted.  Thanks for the prayers and thoughts right now.

Tuesday Feb. 22, 2011

It's early AM Tuesday.  Ed is sleeping for a bit so I have another chance to update.  We're really trying to spend time together during the day and he doesn't like it when I'm on the computer while he's awake so I'll have to post at night......

Back to the chronology of this ..... After the ER doctor looked at the CT scan, he said he needed to admit Ed right away and that he saw a couple of concerns leading him to call for a surgery consult and an oncology consult the following morning.  Both doctors agreed that they needed to obtain a lymph node to biopsy and that the surgeon would look at the small intestine situation at the same time.  They also put Ed on a TPN regimine because his nutritional status is so compromised.  He remains on the TPN and will have it when he comes home as well until he can begin to eat and digest food.  TPN is a hyper-nutrition given through a picc  line that was inserted into a vein in his left bicep. 

On Thursday, Feb. 17 the surgeon did a laproscopic procedure during which he retreived the biggest of the enlarged lymph nodes and looked at the small instestine.  He found 6 areas of "telescoping" of the small intestine.  He did not see any indication that there are growths or tumors in the small intestine and he was able to smooth out the telescoping temporarily.  All the doctors agree that this telescoping problem , which creates blockages for passing food, is likely caused by the lymphoma and they hope it will correct itself when the lymphoma is destroyed by the chemotherapy.  Meanwhile, Ed is really only able to pass tiny amounts of clear liquids, and even then, only somtimes without vomiting and diarrhea. 

We received preliminary lab results on Friday February 18th from Dr. Menco -- mantle cell lymphoma.  Not the news we were hoping for, but he explained that it is treatable and he would be consulting with the mantle cell specialists at City of Hope in Duarte, California.  He explained the basics of what would likely be the recommended treatment and told us he would know more specifics after more definitive test results over the weekend and after the City of Hope consultation scheduled for Monday, Feb. 21st. 

We spent the weekend at Los Robles and Ed had some visitors and rested. 

On Monday, Feb. 21st, the oncologist (Dr. Menco) came 'round and we spent quite some time discussing the consultation with The City of Hope.  Ed's chemo program has been slightly modified from the basic discussion last week, taking into consideration his compromised health state.  The treatments he will receive are based on a program developed by the Nordic Lymphoma Group - a renowned research study out of Copenhagen, Denmark.  It combines intensive chemo-immunotherapy followed by a stem cell transplant.  The chemo schedule starts today (Tuesday, Feb. 22) and likely will follow a schedule something like this:  an alternating series of A and B chemos - A being one day of chemo followed by 2-3 weeks of rest (hopefully at home if he's doing well), then the B part which will be 48 hours of chemo as an in-patient at the hopsital, again followed by 2-3 weeks of rest, then back to the A part, then the B, then the A again and the B again until they have done each part 3 times for a total of 6 rounds of chemo. They will add Rituxan - a drug that essentially tags the cancer cells for destruction by the body and creates a kind of "memory" for the stem cells that should he fall out of remission, the stem cells "remember" the old cancer and attack it aggressively.   If all goes well, that whole program would take about 16-18 weeks.  At some point to be determined, they would likely perform a stem cell harvest at City of Hope and hold those stem cells for later stem cell transplantation, again likely at City of Hope.  Ed feels lucky and grateful to have access to such a high level of care and I think everyone is fascinated by the science of it. 

On Monday the 21st, the oncologist performed a small procedure to retreive some of Ed's bone marrow and a small bone sample from his lower back.  Ed says it wasn't as painful as he anticipated, but it was certainly not a cake walk.  The numbing with lidocaine was the worst and then lots of strange sensations as Dr. Menco retreived the samples he needed.  Glad that is over.  We'll have test results in a couple of days to see if the lymphoma has already affected the bone marrow, but either way, it won't alter the initial chemo, which starts Tuesday, Feb. 22nd.

The doctors will also be doing a chest CT scan today and they want to get a PET scan (a full-body x-ray type test) done soon too.  It's an outpatient procedure and the scheduling has been a challenge, but we'll get it done as soon as possible. 

Ed is in good spirits.  He worries more about everyone else being okay.  He's mostly bored, but very cooperative with the nurses and doctors and asking lots of questions.  His quirky sense of humor is quite intact and he had me post his "treatment plan" on the white board in his room as follows:  #1: order "pajama-jeans" from those TV ads he's seen recently, #2: crack open a Coors Light - it certainly seems to qualify as part of a clear liquid diet, and #3: have stripper poles installed at the foot of his bed.  He has his "target discharge date" listed as YESTERDAY.   He's wearing his Sponge-Bob Square-Pants pajama bottoms (undoubtedly only until the pajama jeans arrive) and the nurses find him quite entertaining.  He likes his doctors very much and feels very confident that he is in excellent hands. 

Thank you everyone for the wonderful messages, phone calls, cards, flowers and offers of help.  As we speak, the master bath at home is being completely remodeled for his comfort when he comes home (thanks Leo, Ryan & Aaron) and Ed is sleeping soundly with a couple of bites of Kristin's homemade jello in his tummy.  Much better than the hospital cafeteria stuff.  Kevin & Joann came by with a photo album of pics from some lakehouse trips, which really boosted Ed's spirits.  He's already busy planning some summer parties and a long distance motorcyle trip for late summer. 

That's it for tonight.  I'll let you all know how he does with the first chemo later today.

It's early Monday morning.  Ed is sleeping for the moment - seems they have to wake him up quite often for all of the various things they need to do and check.  We had a nice evening with Ryan and Aaron. 

I know there are many of you who may want some detailed information and Ed is completely open to sharing what we know, so I'll give you a thumbnail sketch, which will be bigger than a thumbnail.  Ed started having some digestive upset about 2 years ago.  It was infrequent and somewhat mild at that point.  After a brief time, he began seeing a gastroenterology specialist who over the course of some months, performed various tests including colonoscopy, endoscopy, fluroscopy, blood tests, urine & stool tests, abdominal ultrasound and a CT scan.  Everything was coming up negative or with no visible problems, yet his bouts with nausea, vomiting and diarrhea and his weight loss continued and over the course a year, became somewhat more frequent and pronounced.  A year ago, with no definitive diagnosis, Ed went to the UCLA Center for Digestive Diseases.  He was prescribed a medication which he tried for a long period but which brought inconsistent results with little improvement.  He then began to search for another doctor and was turned down by some who perhaps felt his case was  beyond their diagnosic capabilities in the face of the highly regarded doctors who had already been treating him. Ed then went to an endocrinologist in November of 2010 who was also not able to come up with a definiative answer.  Meanwhile, his episodes were becoming more frequent and pronounced and his weight loss was more and more concerning.  We pressed the doctor to repeat some of the earlier tests which were now nearly 2 years old.

About 10 days ago, our frustration level peaked and we discussed going to the Mayo Clinic in Scottsdale, Arizona for a more exhaustive exploration.  The weekend of Aaron's birthday, Ed experienced much more dramatic symptoms including leg and abdominal swelling that was quite unusual and he had been sick every single day for over a week instead of the every few days that had been the previous pattern.  We came to the ER at Los Robles on Sunday, February 13 to check out these new symptoms and see if it was safe for him to travel to Arizona.  The ER doctor performed an abdominal CT scan to investigate the source of swelling, and discovered a large number of enlarged lymph nodes as well as an area of potential intestinal blockage on the scan.  He also noted that the blood tests showed that Ed is suffering from malnutrition due to the absorption problems associated with the vomiting and diarrhea. 

It's 4:30 AM and Ed just woke up and is asking me to log off and spend some time with him before I leave for the office.  I will update more later today.

Sunday, February 20, 2011

Hi to all.  Bear with us as we jump into getting this tool set up to stay in touch.   Hopefully this blog will work I've never set one up or been on one before.  I'm hoping to update the blog at the end of each day if possible, but I know we all understand that the first priority is Ed and whatever he needs.  Sometimes that might mean a delay.  I will do my very best.  Ed says hi to everyone and appreciates the visits today.  I know there were some people who wanted to stop by today and he wasn't feeling up to it as the day wore on.   He says he's sorry.  He's feeling better tonight and we're watching a SNL retrospective with Aaron & Ryan.  He's laughing even though it hurts a little from the surgery.  We agreed that we couldn't think of a better use for the pain meds than to allow laughing. 

I'll check in after he goes to sleep.

Liz