4:00 PM Sunday April 17, 2011

Hej . . .  (that's hello in Swedish).  The weekend went by very quickly, but I wish Ed had been feeling better.  Yesterday he was at least feeling well enough to sit on the patio most of the day with Kristin and Pat, and this morning he was feeling okay, but since about noon he's felt pretty lousy.  I think the chemo "nadering" is most of the issue, plus he tried to eat a little more the past couple of days and his body is having other ideas it seems.  He has some serious acid reflux type feelings and a general feeling of malais - just a crummy, fluish type of feeling with no energy.  We're thankful for no fevers or other dangerous symptoms, but it's just no fun for him to feel like this either. 

He was hoping to go out and get some smaller pants today while I checked out the Scandanavian Festival at Cal Lutheran U (hence the greeting), but it just wasn't in the cards.  When I got home he was still resting in the recliner in spite of his best intentions and he's frustrated that it was such a beautiful day and he couldn't be out enjoying it.  This whole thing would probably be a lot easier on him if we lived in Minnesota or something - these warm, sunny days, the motorcyle right outside in the garage, and the motorhome at the shop just keep beaconing.  Hopefully he won't have to wait much longer.  We're just gonna have to work extra hard to get some weight back on him before he can muscle those big toys around again - today he weighted in at 129 pounds.  (He wanted me to take a picture of his butt and post it to the blog to amuse all of you...... I'll try and continue to lobby for decorum as long as possible but I can't make any promises!)

The weight issue is really a struggle -- we'll just have to continue to get some additional calories into him by eating when he can and by making adjustments as much as possible to the TPN.  He's already getting 108 grams of protein a day just in the TPN (the average person eats about half that amount in a day) but it's just not as simple as upping everything.  The veins and organs can only process so much and they have to balance it all out.  We're just kind of racing the chemo - the hope and assumption is that when the chemo does it's job, the intestines will heal and become functional and the digestive process will return to normal and food absorption and weight gain will follow.  That's another reason why we need to keep on track with the chemo schedule and not have infection set-backs and delays.  It's a constant vigil and pyramid of decisions and balancing of symptoms.   Thank heaven for the highly trained and dedicated team of doctors and nurses he  has!  Can you imagine what people did 20 years ago or a hundred years ago????  Ed has been really dedicated to trying to add some food to his day (at the urging of the doctors) and has had yogurt, white rice, soup broths, ice cream and pudding.  Some of it doesn't taste the same (he still has the metallic taste in his mouth that is common with chemo) and it's not an easy task, but he's doing his best to try. 

Well, we're going to watch a movie and then enjoy the sunset from the backyard.  The fog is starting to roll in and the birds are chirping like mad, but it's a lovely view from the bedroom sliding doors.

By the way, the Scandanavian Festival was pretty awesome.  Lots of delicious food, festive music, kid crafts, Nordic vendors and blonde-haired people!  Picked up a couple of unique cooking utensils and watched my granddaughter Hope paint a real trout (whose spirit is in trout heaven) and use it as a stamp for painting a canvas tote bag to use for grocery shopping!  The swedish meatballs, swedish pancakes and abelskiver were yummy.  Absolutely a new family tradition to attend each year in April.   Coincidence that Ed is receiving the chemotherapy regimen named for the "Nordic" research group who lead the world in mantle cell lymphoma discoveries???????  I think not!  By this time next year he may just have a new hankering for lutefisk with his Coors Light!  That would be fantastic.