Just a quick note......I know some of you are still not able to post comments on the blog.....don't know why and I wish I could be of more help with that, but as an alternative, feel free to send Ed messages directly to his e-mail account: eengelker5741@hotmail.com
He doesn't look at his e-mails every day, but he does look often and will always reply, so I hope that helps some of you who are frustrated with the blog and are hesitant to call. Once he's feeling much better and is stronger, he'll undoubtedly be back to taking lots of phone calls, etc., but e-mail is great because he can get to it as he feels up to it. Leave your phone number in your message too if you think he may not have it stored in his cell phone. Before you know it, you'll be getting an invite to a party of some sort if I know Ed! Be prepared......
Monday, April 4, 2011
6:15 PM Monday April 4, 2011
We're still home and it turned out to be a beautiful day. I went to the office early and came home around 9:30 AM to disconnect Ed's TPN for the day. He showered and then spent most of the day outdoors, enjoying the peace and quiet, the sunshine and the warmth. I don't think I've ever seen him sit in one spot for that long! He was just soaking it up like a sponge!
Glenn Nelson came by this afternoon and our neighbor Craig Fletcher viisted too. I think Ed was grateful for the opportunity for some guy talk - he's been stuck with me and a bunch of nurses (mostly female but not all) for quite a while now... not that Ed is normally the kind of guy who minds being "stuck" with a bunch of women, nurses or otherwise.....it's just usually under different circumstances!
Dr. Mazur is still waiting for some blood and urine cultures which won't be in until tomorrow, but Ed's white count is 16.4, which is higher than the normal range, indicating an infection of some sort. He's had a couple of fevers today around 101.3 and 101.7, but the Tylenol does knock 'em down, so we'll wait and see what tomorrow brings. Ed has a CT scan tomorrow morning and then we'll see Dr. Menco on Wednesday morning to discuss the findings. Keep your fingers crossed for good news.
Ed made it about 3/4 of the way through the Factor tonight.....watching on the patio TV before he dozed off, so I made him come inside and lay down instead of going for the walk we had planned for later. I think being up and outside all day wore him out. Tomorrow we'll shoot for a stroll down to the end of the block.
Keep good thoughts - we feel them coming our way all of the time and we are grateful for the love and prayers.
Glenn Nelson came by this afternoon and our neighbor Craig Fletcher viisted too. I think Ed was grateful for the opportunity for some guy talk - he's been stuck with me and a bunch of nurses (mostly female but not all) for quite a while now... not that Ed is normally the kind of guy who minds being "stuck" with a bunch of women, nurses or otherwise.....it's just usually under different circumstances!
Dr. Mazur is still waiting for some blood and urine cultures which won't be in until tomorrow, but Ed's white count is 16.4, which is higher than the normal range, indicating an infection of some sort. He's had a couple of fevers today around 101.3 and 101.7, but the Tylenol does knock 'em down, so we'll wait and see what tomorrow brings. Ed has a CT scan tomorrow morning and then we'll see Dr. Menco on Wednesday morning to discuss the findings. Keep your fingers crossed for good news.
Ed made it about 3/4 of the way through the Factor tonight.....watching on the patio TV before he dozed off, so I made him come inside and lay down instead of going for the walk we had planned for later. I think being up and outside all day wore him out. Tomorrow we'll shoot for a stroll down to the end of the block.
Keep good thoughts - we feel them coming our way all of the time and we are grateful for the love and prayers.
Sunday, April 3, 2011
8:30 PM Sunday April 3, 2011
Well, we made it through the weekend, at home and safe and sound. We had the little scare last night, but I guess we're probably both just a little sensitive after last week. The fevers are worrisome, but I guess expected with the amount of infection he had. I didn't realize it, but Ed will be on IV antibiotics at home 3 times a day for six weeks! Lisa came and took the necessary blood and urine samples this morning and we'll have results tomorrow from Dr. Mazur. If he needs to adjust or add an antibiotic, that's what we'll do. We had a quiet day - Ed's Mom came over this afternoon and visited. I cooked again today - corn & smoked sausage chowder and biscuits, Lou brought a coconut creame pie over and we had a nice family dinner - Ryan, Lou, Tyler and Ed and I. (Ed just watched, as his digestive tract is still not ready for food, as we found out last weekend.) He slept a lot today since we didn't sleep much last night - hopefully tonight we'll get some better rest.
Ed will get a CT scan either tomorrow or Tuesday and we're hoping for excellent news on the lymphoma front. With any luck, they may also be able to see what's going on with the telescoping of the small intestine and whether or not that's getting better. Sometimes they can't see it very well.
Thanks for the great framed photo, Tom & Debbie! It was a lovely wedding gift - a pic of us at the lake on one of our many fun times. And Ginny & Per - the CD books and puzzles for Ed will definately help pass the time while he's resting and recouperating - very thoughtful. I also got to see the fabulous book that Melia and Joann & Kevin put together from the motorcycle "love ride" for Ed a couple of weeks ago. It's a cool hard-bound book, filled with lots of photos of our riding friends, and we've really enjoyed looking at it. What a labor of love! Thank you from Ed's heart. We can't wait until we can join you all again at Deer Lodge on a beautiful Sunday afternoon. THAT will be something to celebrate!
I'm going to log off and hit the hay. We have one round of meds that needs to happen during the night around 3:30 AM, so we'll try and get a few hours of solid rest before then.
Talk to you tomorrow.
Ed will get a CT scan either tomorrow or Tuesday and we're hoping for excellent news on the lymphoma front. With any luck, they may also be able to see what's going on with the telescoping of the small intestine and whether or not that's getting better. Sometimes they can't see it very well.
Thanks for the great framed photo, Tom & Debbie! It was a lovely wedding gift - a pic of us at the lake on one of our many fun times. And Ginny & Per - the CD books and puzzles for Ed will definately help pass the time while he's resting and recouperating - very thoughtful. I also got to see the fabulous book that Melia and Joann & Kevin put together from the motorcycle "love ride" for Ed a couple of weeks ago. It's a cool hard-bound book, filled with lots of photos of our riding friends, and we've really enjoyed looking at it. What a labor of love! Thank you from Ed's heart. We can't wait until we can join you all again at Deer Lodge on a beautiful Sunday afternoon. THAT will be something to celebrate!
I'm going to log off and hit the hay. We have one round of meds that needs to happen during the night around 3:30 AM, so we'll try and get a few hours of solid rest before then.
Talk to you tomorrow.
8:15 AM Sunday, April 3, 2011
Happy Sunday! It's a little overcast outside here in Thousand Oaks, but the view from the windows at home is preferable to the view from a hospital room no matter what the weather! Just to putter around in my robe with a cup of coffee (Almond Joy creamer in it today) is an ahhhhh moment.
Gave Ed all his morning meds and his IV antibiotic, so he'll continue to doze for a little bit until the TPN is finished around 10:30. I'm watching the food channel and looking at cookbooks to decide what to make for dinner today - Ed's mom is coming over later and she'll have dinner with me, so it will be nice to cook for her.
We had a bit of a sleepless night - Ed got a low-grade fever a couple of times - 99.7 and 100.5 but the Tylenol knocked it down. He also has some testicular pain and swelling, so I called Lisa, our home health care nurse, and she answered the phone at 2:30 AM and helped me. It's so much easier staying at home knowing that she's only a phone call away! We just spoke again and she's going to get in touch with Dr. Mazur's office and let them know what's going on to see whether we need to go have anything checked out today.
9:25: Lisa just called and Dr. Mazur wants her to come by and draw blood and get a urine sample to culture this morning so Lisa will be here in less than an hour. I better jump in the shower.......and off the blog. I'll update later.
Gave Ed all his morning meds and his IV antibiotic, so he'll continue to doze for a little bit until the TPN is finished around 10:30. I'm watching the food channel and looking at cookbooks to decide what to make for dinner today - Ed's mom is coming over later and she'll have dinner with me, so it will be nice to cook for her.
We had a bit of a sleepless night - Ed got a low-grade fever a couple of times - 99.7 and 100.5 but the Tylenol knocked it down. He also has some testicular pain and swelling, so I called Lisa, our home health care nurse, and she answered the phone at 2:30 AM and helped me. It's so much easier staying at home knowing that she's only a phone call away! We just spoke again and she's going to get in touch with Dr. Mazur's office and let them know what's going on to see whether we need to go have anything checked out today.
9:25: Lisa just called and Dr. Mazur wants her to come by and draw blood and get a urine sample to culture this morning so Lisa will be here in less than an hour. I better jump in the shower.......and off the blog. I'll update later.
Saturday, April 2, 2011
Saturday, April 2, 2011
What a change of pace! We got home around 6:30 last night and Lisa Teevan, our home health care nurse, came by and reviewed all the meds (8 of them!) plus the TPN and it's supplements and additives that go in fresh each day - a little like making a meal in a bag for Ed. Went to the pharmacy at 8:30 PM and got the prescriptions refilled along with the Tegaderm dressings that lets him shower and keep the port incision drainage tubes and PICC line dry. It would be a shame to pass up taking advantage of the beautiful new tumbled marble tile shower in the new bathroom. It's also a steam shower, so there's a bench in the shower that he can sit on and use the hand-held unit so it's very relaxing.
Ed had a bit of a rough night - he didn't feel very well, but his temp stayed at 99.3 all night. Lisa explained that his fluids are shifting with the change from full time PPN to 14-hour compressed TPN at home, along with the switch from IV meds to oral and sublingual meds at home. He had pretty bad night sweats - but it felt good to sleep in a regular bed! Things settled down for him around 4 AM so we slept until about 9. He feels better this morning and Robert Winter is here visiting for a bit before he leaves to go to the airport to return to Oregon later this afternoon.
Our friends Craig and Katie had a new baby girl on Thursday at Los Robles - little Ashlyn joins her 23-month old sister Bryn and the whole family is doing well. Congrats to you - sorry we weren't able to come by a visit in the hospital yesterday - it's always such a whirlwind getting everything set up and organized to home. We hope to see you and your new little one soon.
Ed has a busy week ahead - he will have a CT scan on Monday or Tuesday, see Dr.. Menco on Wednesday and Dr. Mazur on Friday. Then we will have some information about what's next for the chemo schedule. I really hope he'll have a week of peace and quiet at home before the next round. Last night we just sat for a while in the chair with the doors open (it was 75 degrees out!) and mostly enjoyed the SILENCE! All we could hear was the sound of the birds in the yard. You forget what quiet sounds like after being in the hospital for a while - all the machinery, people, pumps, activity in the hallways, etc. The silence was almost deafening by comparison!
Ed has gone for a ride with Robert Winters (to whom I gave STRICT instructions before they left) and I'm baking oatmeal raisin cookies from my grandmother's recipe. It's a little dreary out and a fog layer has enveloped the ravine behind our home, but no rain. It's a perfect baking, puttering in the kitchen kind of day and that's exactly what I intend to do.
Call us if you'd like to visit now - his whites are up to 3.8 so he can have company as long as no one is sick and we just have the extra precautions of vigorous hand washing, keeping distance and avoiding direct contact. He gets tired pretty easily, so we'll just go day by day.
Gotta run and take my cookies out of the oven.........
Ed had a bit of a rough night - he didn't feel very well, but his temp stayed at 99.3 all night. Lisa explained that his fluids are shifting with the change from full time PPN to 14-hour compressed TPN at home, along with the switch from IV meds to oral and sublingual meds at home. He had pretty bad night sweats - but it felt good to sleep in a regular bed! Things settled down for him around 4 AM so we slept until about 9. He feels better this morning and Robert Winter is here visiting for a bit before he leaves to go to the airport to return to Oregon later this afternoon.
Our friends Craig and Katie had a new baby girl on Thursday at Los Robles - little Ashlyn joins her 23-month old sister Bryn and the whole family is doing well. Congrats to you - sorry we weren't able to come by a visit in the hospital yesterday - it's always such a whirlwind getting everything set up and organized to home. We hope to see you and your new little one soon.
Ed has a busy week ahead - he will have a CT scan on Monday or Tuesday, see Dr.. Menco on Wednesday and Dr. Mazur on Friday. Then we will have some information about what's next for the chemo schedule. I really hope he'll have a week of peace and quiet at home before the next round. Last night we just sat for a while in the chair with the doors open (it was 75 degrees out!) and mostly enjoyed the SILENCE! All we could hear was the sound of the birds in the yard. You forget what quiet sounds like after being in the hospital for a while - all the machinery, people, pumps, activity in the hallways, etc. The silence was almost deafening by comparison!
Ed has gone for a ride with Robert Winters (to whom I gave STRICT instructions before they left) and I'm baking oatmeal raisin cookies from my grandmother's recipe. It's a little dreary out and a fog layer has enveloped the ravine behind our home, but no rain. It's a perfect baking, puttering in the kitchen kind of day and that's exactly what I intend to do.
Call us if you'd like to visit now - his whites are up to 3.8 so he can have company as long as no one is sick and we just have the extra precautions of vigorous hand washing, keeping distance and avoiding direct contact. He gets tired pretty easily, so we'll just go day by day.
Gotta run and take my cookies out of the oven.........
Friday, April 1, 2011
2:30 PM Friday, April 1, 2011
Ed is going home today! NOT an April Fool's joke!!!!! They are arranging all the home health care for the IV antibiotics, TPN, etc. and I'm going to jump off and get packing.
More later. I'll let you all know how he's doing later tonight after everything gets settled. He's very anxious to get home and I have a LOT to do to get it organized. (I wish they would be more organized about decision making on a Friday afternoon, but that's how it goes.)
More later. I'll let you all know how he's doing later tonight after everything gets settled. He's very anxious to get home and I have a LOT to do to get it organized. (I wish they would be more organized about decision making on a Friday afternoon, but that's how it goes.)
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