Today has flown by, surprisingly. Ed had a brief surgical procedure today to put in a PICC line - the central line he needs for the TPN nutrition. Everything went well and he's a little groggy this afternoon. He had 2 units of platelets just before the surgery to make sure he wouldn't have a bleeding problem during the procedure and he's continued to get the antibiotics, PPN, potassium and fluids today. He's in the middle of getting another blood transfusion as his red count was still below the threshhold level but his white count came up a little today from .5 yesterday to 1.2 today. We'll take any progress, and we know that little steps lead to bigger ones.....
Dr. Menco came in and said they will probably leave this PICC line for 2 or 3 days and then put in a fresh one before Ed can go home, just to make sure there's no residual bacteria in the line left over from the staph infection. He will also order another abdominal CAT scan probably for Monday so we can get an idea of how well the ARA-C worked on the lyphoma. His next chemo schedule would normally have been April 8 (3 weeks from his last ARA-C at UCLA), but Dr. Menco said we'll just wait and see because they can't blast him again if his white count is still low. It would wonderful to have a few days of being at home and feeling good before he has to sign up for the carnival roller coaster of chemo again. I'd really like to have a chance to get him outside during these beautiful warm days -- I was really hoping to get him out today in the 80-plug degree sunshine, even if just for a few minutes, but it wasn't in the cards today. We're due for another spurt of warm weather early next week, so we'll shoot for that. We haven't seen the view from our patio in quite a while, and as many of you know, it's pretty spectacular, so that's absolutely something to look forward to enjoying.
I made an edit to the blog from Tuesday - I had listed Don Colucci instead of Don Tucker as the photo album "author" from Colorado - my apologies to Mr. Tucker. (I'm going to have a word with my editor....!) Don Colucci called and thanked me for his short-lived "celeb" status on the blog.......thanks for setting me straight .....and thanks, Don Tucker for the great album. Ed has looked at it several times and has enjoyed thinking about all the memories the photos represent. It really helps keep his mind off of all the poking and prodding and always brings a smile.....
Ed says hi to everyone, and thanks you all so much for the prayers and cards - another stack came in the mail - lots of wedding cards too. It means a lot.
Well, it's 5:05 PM and apparently the sound of my fingers "pounding" on the keyboard are disrupting full enjoyment of the "Factor" so I guess I'll mosey downstairs and make that almost daily tough decision I confront as I pass the gift shop .....do I feel like a nut? or not. Almond Joy or Mounds.....
News at eleven......
Thursday, March 31, 2011
Wednesday, March 30, 2011
7:00 PM Wednesday, March 30, 2011
Want to keep you all updated, especially during these worrisome past few days where minutes feel like hours and everyone is waiting for news. Today has been a "stable" day, which I'm grateful for after the roller coaster we've been on since Sunday.
Ed has been up and down today, but the lows haven't been so low and the nurses have been working really hard to balance everything. Just juggling the seemingly endless number of IV infusions and medications is astonishing. I told Ed's nurse, Fay, that she has more IV bags stacked up than planes circling Chicago airport in a snowstorm! Today he's got PPN around the clock, potassium piggybacks on that because his counts have been low, he's had 2 units of platelets, which they can only infuse while his temperature is below 99.9, he has 2 different IV antibiotic infusions - 1 for 4 hours each day and one for 8 hours each day, he's got saline for fluids, lipids to go with the PPN, zofran infusion every 6 hours for nausea, he's getting 1 to 2 units of red blood each day and then the IV pushes: dilaudid, ativan, protonix and valtrex for the face, mouth and throat sores that have appeared in the past 24 hours. Dr. Mazur just came by and said he's not going to commit to putting in the PICC line tomorrow because the platelets are still so low. We'll see tomorrow.
John Lercel has been here visiting and it's really boosted Ed's spirits for sure. They've been talking hot rods and boats so I've been quietly working in the corner since I know nothing about exhaust systems, transmissions or impellers. Tyler is having dinner with Lou and they'll undoubtedly play a game or two of tile rummy. So all's quiet on the western front for the moment. I have once again missed the cafeteria dinner period (probably my good fortune), so I will likely run home and grab some food and some shut eye (I hope in that order). I've never really enjoyed sleeping in my fettuccini ....
Ed has gotten a lot of color back in his skin today with the blood infusions and he's feeling better tonight. I think we'd all benefit from some IV fluids and new blood on a regular basis - it's amazing how it changes things so quickly!
Thanks again for the continued thoughts and prayers ...... they obviously have helped pull Ed through this tough time. He feels the love and the energy.
Ed has been up and down today, but the lows haven't been so low and the nurses have been working really hard to balance everything. Just juggling the seemingly endless number of IV infusions and medications is astonishing. I told Ed's nurse, Fay, that she has more IV bags stacked up than planes circling Chicago airport in a snowstorm! Today he's got PPN around the clock, potassium piggybacks on that because his counts have been low, he's had 2 units of platelets, which they can only infuse while his temperature is below 99.9, he has 2 different IV antibiotic infusions - 1 for 4 hours each day and one for 8 hours each day, he's got saline for fluids, lipids to go with the PPN, zofran infusion every 6 hours for nausea, he's getting 1 to 2 units of red blood each day and then the IV pushes: dilaudid, ativan, protonix and valtrex for the face, mouth and throat sores that have appeared in the past 24 hours. Dr. Mazur just came by and said he's not going to commit to putting in the PICC line tomorrow because the platelets are still so low. We'll see tomorrow.
John Lercel has been here visiting and it's really boosted Ed's spirits for sure. They've been talking hot rods and boats so I've been quietly working in the corner since I know nothing about exhaust systems, transmissions or impellers. Tyler is having dinner with Lou and they'll undoubtedly play a game or two of tile rummy. So all's quiet on the western front for the moment. I have once again missed the cafeteria dinner period (probably my good fortune), so I will likely run home and grab some food and some shut eye (I hope in that order). I've never really enjoyed sleeping in my fettuccini ....
Ed has gotten a lot of color back in his skin today with the blood infusions and he's feeling better tonight. I think we'd all benefit from some IV fluids and new blood on a regular basis - it's amazing how it changes things so quickly!
Thanks again for the continued thoughts and prayers ...... they obviously have helped pull Ed through this tough time. He feels the love and the energy.
8 AM Wednesday March 30, 2011
Started a posting last night around midnight at the hospital and I fell asleep in the chair mid-way without saving it to the blog. Woke up around 1:00 AM and went home for a few hours of sleep in a bed.
Ed had a much better afternoon and evening fever wise - it's hovering between 99.9 and 100.7 so he's much more comfortable than he was during the spiking. He's getting PPN around the clock now with fluids and his antibiotics, acid reflux medication in his IV, anti-nausea in the IV as well as pain meds and ativan to keep him level from a pain and anxiety standpoint. He did get another unit of red blood cells yesterday as well and the platelets. Hopefully his platelet count will be up enough today to allow them to the put in the PICC line so we can get him back on the TPN for better nutrition.
His spirits were much better yesterday afternoon - his long-time grade-school buddies Robert & Mike Winters (twins) came by for a little while, Kristin stopped by after work briefly and Aaron came by in the evening for a few hours. Ed was pretty exhausted by 9 PM, but it boosted his spirits and everyone observed the mandatory masks and sanitation protocols. Even though his counts are really low, Dr. Menco said that as long as he doesn't have direct contact (no touching), and no small children and no sick people, he can have a couple of brief visitors a day if they stay outside a 6 foot perimeter of the bed and Ed is wearing a mask as well. It boosts his spirits and that's an important part of healing too. The broad spectrum antibiotic in his IV will also give him a little protection, but we don't want to push it.
There were lots more cards in the mail from the weekend - from near and far, people from the past and present, as well as a small photo album from an old friend with pictures of good times from the 80s. We had a fun time chuckling at the OP shorts and silly hair styles, and Ed especially enjoyed recalling the fond memories of good times. Thanks to Don Tucker in Colorado for sending that out - must have taken some looking to find all those great old pics!
I'm at this office again this morning and will update later today after the doctors have been in to see us.
Ed had a much better afternoon and evening fever wise - it's hovering between 99.9 and 100.7 so he's much more comfortable than he was during the spiking. He's getting PPN around the clock now with fluids and his antibiotics, acid reflux medication in his IV, anti-nausea in the IV as well as pain meds and ativan to keep him level from a pain and anxiety standpoint. He did get another unit of red blood cells yesterday as well and the platelets. Hopefully his platelet count will be up enough today to allow them to the put in the PICC line so we can get him back on the TPN for better nutrition.
His spirits were much better yesterday afternoon - his long-time grade-school buddies Robert & Mike Winters (twins) came by for a little while, Kristin stopped by after work briefly and Aaron came by in the evening for a few hours. Ed was pretty exhausted by 9 PM, but it boosted his spirits and everyone observed the mandatory masks and sanitation protocols. Even though his counts are really low, Dr. Menco said that as long as he doesn't have direct contact (no touching), and no small children and no sick people, he can have a couple of brief visitors a day if they stay outside a 6 foot perimeter of the bed and Ed is wearing a mask as well. It boosts his spirits and that's an important part of healing too. The broad spectrum antibiotic in his IV will also give him a little protection, but we don't want to push it.
There were lots more cards in the mail from the weekend - from near and far, people from the past and present, as well as a small photo album from an old friend with pictures of good times from the 80s. We had a fun time chuckling at the OP shorts and silly hair styles, and Ed especially enjoyed recalling the fond memories of good times. Thanks to Don Tucker in Colorado for sending that out - must have taken some looking to find all those great old pics!
I'm at this office again this morning and will update later today after the doctors have been in to see us.
Tuesday, March 29, 2011
5:00 PM Tuesday, March 29, 2011
Sorry for the delay posting today - Dr. Menco didn't come in until almost 2:00 today and I just got to a computer to post. It was a very rough night - probably the roughest night he's had so far. Spiking fever, diarrhea, nausea, rigors (the nurse told me it's the term for uncontrollable shaking/shivering). He went from laying on the cooling blanket (which Ed has decided could replace waterboarding as a form of torture) to a 104 fever 2 hours later, to the fever finally breaking around 3:00 AM and then the shaking and shivering until about 4:30 AM. It was a long night of up and down and giving him crushed pills, IVs, putting in 2 more IV lines in his arm and hand and having 5 different IV bags going at once. It was a very scary few hours. Everything finally started turning around at about 4:45 AM and his temp went down to 99.9 and as of mid-afternoon it was still responding to the ice packs under his arms and the crushed Tylenol mixed with water. He was feeling so much better today fever wise, but his platelets didn't take and he's getting more this afternoon and he'll get more blood later as well when they can disconnect something to get an available line. Dr. Mazur came by and said it will be another day before they can insert the PICC line because of his low platelets, so he'll stay on the PPN for another day and hopefully things will improve tomorrow in the platelet department.
The staph infection is still there and Dr. Menco and Mazur both said it will take 7-10 days of IV antibiotics to erradicate it and 2 weeks before the drainage tubes will come out from the port removal. Dr. Menco is postpoining a decision on his next chemo schedule until after we see another abdominal scan. We're on the day-by-day schedule now instead of the 3-week plan for chemo. Dr. Menco's words: "his whites are at rock bottom right now, so there's no where to go but up!"
It was such a relief to see him feeling better today, although he is pretty exhausted. I'm at the office right now, and when I get back to the hospital in a little bit, I'll get the laptop back out and post an update before I go to bed. Thanks for your prayers and texts today. They obviously have helped!
The staph infection is still there and Dr. Menco and Mazur both said it will take 7-10 days of IV antibiotics to erradicate it and 2 weeks before the drainage tubes will come out from the port removal. Dr. Menco is postpoining a decision on his next chemo schedule until after we see another abdominal scan. We're on the day-by-day schedule now instead of the 3-week plan for chemo. Dr. Menco's words: "his whites are at rock bottom right now, so there's no where to go but up!"
It was such a relief to see him feeling better today, although he is pretty exhausted. I'm at the office right now, and when I get back to the hospital in a little bit, I'll get the laptop back out and post an update before I go to bed. Thanks for your prayers and texts today. They obviously have helped!
Monday, March 28, 2011
9:00 PM Monday, March 28, 2011
After I typed the time and date tonight, it reminded me of Star Trek when they start each episode by announcing the time logged on the ship's journey. Today is kind of similar - very surreal and a long journey that feels far away from "home".
Ed is pretty sick today. His fever has not been at all cooperative since about noon - 102 to 103.5 consistently. For the past 3 hours he has had to lay on a cooling blanket - a water filled pad that has a refrigeration unit at the end of his bed that circulates the water and keeps it chilled to 57 degrees. He has one more hour to go - it was a necessary step in order to give him the blood transfusion that he needed - they can't infuse blood when his body temp is so high, so they are lowering it by cooling the room down and having him lay on the cooling "blanket". I think he has finally fallen asleep from the sheer exhaustion of shivering so much. It is very hard to watch him and resist the temptation to cover him with blankets and tuck him in to warm up. He's only allowed a thin white sheet over him, which doesn't provide any warmth, just some cover from having the a/c blowing directly on him. They have turned the thermostat in the room down by 6 degrees - I'm typing huddled under 3 blankets!
This staph infection if definitely kicking his butt. As Dr. Menco said today, Ed is pretty fragile right now and it's a delicate balance of prioritizing the issues and getting each one corrected without creating another problem. When the blood transfusion is finished tonight, they are starting him on PPN, which is a limited nutrition fluid that is not as substantial as TPN. PPN can be given through an IV line, whereas TPN must be given through a central line (like a port or PICC line) because it tears up the veins too quickly because it's so irritating. They may put in a temporary PICC line tomorrow afternoon just to get him back on the TPN but Dr. Mazur said they would probably not be able to leave it for long because it will quickly get contaminated with the staph as well. On a good note, the platelets he got today seem to have helped with reducing the bleeding from the incision where the port was removed - with the platelets so low, his blood wasn't clotting properly. Thank goodness for even small victories today.
I'm going to jump off the blog for tonight - just wanted to give you a quick update. I will hopefully have more and better news tomorrow - in any event, I'll try and update you by noon.
Ed is pretty sick today. His fever has not been at all cooperative since about noon - 102 to 103.5 consistently. For the past 3 hours he has had to lay on a cooling blanket - a water filled pad that has a refrigeration unit at the end of his bed that circulates the water and keeps it chilled to 57 degrees. He has one more hour to go - it was a necessary step in order to give him the blood transfusion that he needed - they can't infuse blood when his body temp is so high, so they are lowering it by cooling the room down and having him lay on the cooling "blanket". I think he has finally fallen asleep from the sheer exhaustion of shivering so much. It is very hard to watch him and resist the temptation to cover him with blankets and tuck him in to warm up. He's only allowed a thin white sheet over him, which doesn't provide any warmth, just some cover from having the a/c blowing directly on him. They have turned the thermostat in the room down by 6 degrees - I'm typing huddled under 3 blankets!
This staph infection if definitely kicking his butt. As Dr. Menco said today, Ed is pretty fragile right now and it's a delicate balance of prioritizing the issues and getting each one corrected without creating another problem. When the blood transfusion is finished tonight, they are starting him on PPN, which is a limited nutrition fluid that is not as substantial as TPN. PPN can be given through an IV line, whereas TPN must be given through a central line (like a port or PICC line) because it tears up the veins too quickly because it's so irritating. They may put in a temporary PICC line tomorrow afternoon just to get him back on the TPN but Dr. Mazur said they would probably not be able to leave it for long because it will quickly get contaminated with the staph as well. On a good note, the platelets he got today seem to have helped with reducing the bleeding from the incision where the port was removed - with the platelets so low, his blood wasn't clotting properly. Thank goodness for even small victories today.
I'm going to jump off the blog for tonight - just wanted to give you a quick update. I will hopefully have more and better news tomorrow - in any event, I'll try and update you by noon.
8:45 AM Monday, Marchf 28, 2011
Yes, Jeanne, his white count is 0.4 ....... as of now, his temp is 102.7 .....it went down to 101.4 at one point, but keeps spiking, as the nurse said it will until we get the infection under control. They are waiting for a window when it drops below 100.5 to give him a pack of platelets which he needs. Today will be just watch and wait and keep trying to get the fever and infection under control. He's on 2 different IV antibiotics. The port site is still draining pretty good so they have to change the dressing every few hours. Just waiting for Dr. Menco and Dr. Mazur today around lunch time to give us an updated plan. I'll let you know when I have more to report.
Sunday, March 27, 2011
10:00 PM Sunday March 27, 2011
A quick update on Ed....... Dr. Matrisciano removed the port earlier this afternoon and the surgery went fine. He left 2 drainage tubes in place until the infection clears. Dr. Mazur (infectious disease specialist) came in this afternoon. They are going to culture the port to see if they can find the source of the infection, but he said with Ed's white count so low, it could be from any one of a number of sources. Ed is getting IV antibiotics for now and will probably continue to receive them until the blood cultures show no infection. They got his fever down to 100.7 earlier today, but now tonight it's back up to 102.7, so he's laying with ice packs under each arm to help get his temperature down. Not very comfortable for him, as he's got shivers and chills, but unfortunately, it's what has to be done. Everyone has agreed his digestive tract is still not ready to have anything in it, even though he wants to eat. The diarrhea is back so we'll postpone the next eating experiment for a while. He's just going to have to stay put until they can get a PICC line or another type of access in him, hopefully on Tuesday, because right now there isn't any line to use for his TPN and since he can't eat, he isn't getting any nutrition, just fluids. His white count is down from 3.2 on Friday to .4 this afternoon, but his platelets and red count are still okay, so he may not need any blood this trip. Anything to avoid having to put another needle into him is good news. We're back to no visitors for a few days again, but once they get the infection cleared, his white count should start to go up.
Ed is pretty groggy from the surgery anesthesia and the pain meds he's getting and he'll probably sleep pretty soundly through the night. Other than changing the surgery dressings, it should be a quiet night for him. I will probably go home in a little bit and get some sleep since we're so close to Los Robles. We came to ER this morning without bringing much of anything, and I'm not sure I can muster the uumph to go home and re-pack, especially after just getting it all put away yesterday for the first time since February 13th! Ed's nurse tonight is Marie and she's wonderful. She took care of Ed several of the roughest nights with the first round of chemo, so it makes me feel a little better to go home for a bit knowing she'll be here with him until 7 AM. She has promised to call my cell if anything comes up.
More news tomorrow. Hope you sleep soundly!
Ed is pretty groggy from the surgery anesthesia and the pain meds he's getting and he'll probably sleep pretty soundly through the night. Other than changing the surgery dressings, it should be a quiet night for him. I will probably go home in a little bit and get some sleep since we're so close to Los Robles. We came to ER this morning without bringing much of anything, and I'm not sure I can muster the uumph to go home and re-pack, especially after just getting it all put away yesterday for the first time since February 13th! Ed's nurse tonight is Marie and she's wonderful. She took care of Ed several of the roughest nights with the first round of chemo, so it makes me feel a little better to go home for a bit knowing she'll be here with him until 7 AM. She has promised to call my cell if anything comes up.
More news tomorrow. Hope you sleep soundly!
1:30 PM Sunday, March 27, 2011
A brief hello.....we're back at Los Robles Hospital......had a peaceful 34 hours at home, but about 4:15 AM Ed woke me up feeling bad with chills and shivers. I felt him burning up with fever - took his temperature and it was 103.3. I immediately called Dr. Menco's cell, he answered and told me to take Ed to the emergency room. They took the dressings off his chest port (which Ed also said starting hurting during the night) and it appeared to be inflamed with some slight discharge. Dr. Menco came and they immediately started Ed on IV antibiotics and Tylenol to reduce the fever. They did a chest x-ray and consulted with the infectious disease doctor and called Dr. Matriciano (the surgeon) to decide what to do about the port. The concensus was that it had to come out.
Ed is in surgery as we speak to remove the port (which is probably infected - they will do a blood culture on it). He needs to have some sort of access for his meds and TPN, so the plan right now is to take out the port, sanitize his blood with IV antibiotics for a day and then put in some other type of port access (maybe another PICC line) and get him back on the TPN sometime tomorrow night. He's feeling pretty lousy, which is a such a contrast to our day yesterday! We slept a little later than usual and took the morning slowly, enjoying showering in our brand new bathroom. We went to the market so Ed could pick out a few things he thought he might enjoy trying to eat. He dozed and watched movies all afternoon, I puttered in the kitchen making homemade navy bean soup, apple crisp and cornbread with honey butter for dinner, which Ed had requested. We ate on trays in the bedroom (he enjoyed a little soup and cornbread) watching Diners, Drive-Ins and Dives. Ed was pretty tired so he went to bed around 8:30 and I read until it was time to connect his TPN and give him his nighttime meds. Ed usually gets up several times during the night because he's getting all his fluids at night, but last night he was more restless than normal after about 2 AM. I guess that's when everything started to go south and by 4:30 his fever was really spiking. It all happened pretty fast. Dr. Menco says that's how it happens and that's why we have his cell #. (I wonder how he does it!)
Ed's white count has dropped since Friday, which Dr. Menco said means the Nulasta shot isn't working anymore. Not sure what that means yet in terms of alternatives, I'm just glad we live so close to the hospital, and that everything has been able to be arranged so quickly today to get him what he needs. The vomiting is back today as well, so it may have been too soon to trying eating solid food. We'll see.
Looks like we'll be here again for a couple of days at this point, don't know any more than that. I'm going to go downstairs to wait for the surgeon and then I'll try and get back to the blog later tonight and update you all about any news. Poor guy....he's really been through the ringer. Keep those healing thoughts and prayers coming Ed's way. I'll be back in touch.
Ed is in surgery as we speak to remove the port (which is probably infected - they will do a blood culture on it). He needs to have some sort of access for his meds and TPN, so the plan right now is to take out the port, sanitize his blood with IV antibiotics for a day and then put in some other type of port access (maybe another PICC line) and get him back on the TPN sometime tomorrow night. He's feeling pretty lousy, which is a such a contrast to our day yesterday! We slept a little later than usual and took the morning slowly, enjoying showering in our brand new bathroom. We went to the market so Ed could pick out a few things he thought he might enjoy trying to eat. He dozed and watched movies all afternoon, I puttered in the kitchen making homemade navy bean soup, apple crisp and cornbread with honey butter for dinner, which Ed had requested. We ate on trays in the bedroom (he enjoyed a little soup and cornbread) watching Diners, Drive-Ins and Dives. Ed was pretty tired so he went to bed around 8:30 and I read until it was time to connect his TPN and give him his nighttime meds. Ed usually gets up several times during the night because he's getting all his fluids at night, but last night he was more restless than normal after about 2 AM. I guess that's when everything started to go south and by 4:30 his fever was really spiking. It all happened pretty fast. Dr. Menco says that's how it happens and that's why we have his cell #. (I wonder how he does it!)
Ed's white count has dropped since Friday, which Dr. Menco said means the Nulasta shot isn't working anymore. Not sure what that means yet in terms of alternatives, I'm just glad we live so close to the hospital, and that everything has been able to be arranged so quickly today to get him what he needs. The vomiting is back today as well, so it may have been too soon to trying eating solid food. We'll see.
Looks like we'll be here again for a couple of days at this point, don't know any more than that. I'm going to go downstairs to wait for the surgeon and then I'll try and get back to the blog later tonight and update you all about any news. Poor guy....he's really been through the ringer. Keep those healing thoughts and prayers coming Ed's way. I'll be back in touch.
Friday, March 25, 2011
9:50 PM Friday, March 25th, 2011
Honey.......we're home.......... I can't believe it's been 40 days...... must be biblically prophetic.... We got home early this evening and it took a while to get the necessary unpacking done, but we're pretty settled in and Ed is sleeping. I hope he'll sleep really peacefully and well tonight - it's been a long wait to get back in a familiar place.
Dr. Menco was pleased with Ed's white cell blood count today - it's up a little since Tuesday, which means the Nulasta is definately working to stimulate white production. That means he's better protected against possible infection while we wait for the chemo to do it's work. He lost 3 more pounds since Tuesday, but it's probably because he's gotten more active the past couple of days - walking, etc. and we need to adjust his TPN to up the calories to compensate. The pharmacy will re-mix his formula by Monday and we'll keep adjusting it to make sure he gains from here on out. We check in with Dr. Menco on Monday to check counts again and start talking about the next chemo round and what protocol will be appropriate. Hopefully Ed will have a week to 10 days of feeling good and getting stronger before the next round.
For our local friends, I have a hunch Ed will be anxious to have some visitors this weekend (me too!) - he's really missed his normally social lifestyle, so my best advice is call if you're in the area and we'll just play it by ear. As we all know, Ed has a tendency to "go for the gusto" and overdo (things haven't changed much) and he may be feeling tired at any given moment, but I know he'll do his best to be up for company. Just don't call too early......we're both looking forward to sleeping in a little!
Thank you all for the beautiful wedding cards and all your best wishes...... we will plan a celebration once Ed's health permits and it will be a great party that we will be so happy to share with all of you, the amazing friends and family who have been so thoughtful and supportive. We're going to have to find a pretty big place for sure.
I'm going to jump off the blog and sigh as I settle into my familiar bed with a cup of tea.....and my Kindle.......with Ed dozing peacefully ........ just a little bit of heaven in Thousand Oaks!
Dr. Menco was pleased with Ed's white cell blood count today - it's up a little since Tuesday, which means the Nulasta is definately working to stimulate white production. That means he's better protected against possible infection while we wait for the chemo to do it's work. He lost 3 more pounds since Tuesday, but it's probably because he's gotten more active the past couple of days - walking, etc. and we need to adjust his TPN to up the calories to compensate. The pharmacy will re-mix his formula by Monday and we'll keep adjusting it to make sure he gains from here on out. We check in with Dr. Menco on Monday to check counts again and start talking about the next chemo round and what protocol will be appropriate. Hopefully Ed will have a week to 10 days of feeling good and getting stronger before the next round.
For our local friends, I have a hunch Ed will be anxious to have some visitors this weekend (me too!) - he's really missed his normally social lifestyle, so my best advice is call if you're in the area and we'll just play it by ear. As we all know, Ed has a tendency to "go for the gusto" and overdo (things haven't changed much) and he may be feeling tired at any given moment, but I know he'll do his best to be up for company. Just don't call too early......we're both looking forward to sleeping in a little!
Thank you all for the beautiful wedding cards and all your best wishes...... we will plan a celebration once Ed's health permits and it will be a great party that we will be so happy to share with all of you, the amazing friends and family who have been so thoughtful and supportive. We're going to have to find a pretty big place for sure.
I'm going to jump off the blog and sigh as I settle into my familiar bed with a cup of tea.....and my Kindle.......with Ed dozing peacefully ........ just a little bit of heaven in Thousand Oaks!
Thursday, March 24, 2011
10 AM Thursday, March 24th, 2011
Gosh....I missed a day ..... hectic getting ready to move back to the house. Ed is feeling okay - just extremely exhausted, which makes him annoyed, cause he doesn't want to be tired! He is getting serious cabin fever and he wants to be up and doing things again......driving, going places, eating.....but it's just too soon. It's frustrating when the mind is trying to will a body that's not quite able yet.......
Fortunately, the side-effects of the chemo have been pretty well controlled with the medications - very little diarrhea or vomiting, some nausea, mostly just exhausted and the expected drop in blood counts, etc. It's really best described as just feeling "icky, crummy" (true medical terminology). We go back to Dr. Menco tomorrow for blood work to check on everything.....and hopefully we'll move back to the house after that. It's been wonderful at Lou's, but I'm sure she's anxious to have her place back and I know Ed is anxious to sleep in his own bed again. It's been 6 long weeks.......
The mail was full of cards again last night and I took them all to Ed and I'm sure he'll be opening them today. He loves getting the awesome messages from the blog as well. I know some of you are frustrated with not being able to post, so feel free to send e-mails to me at emeraldcityliz@gmail.com
and I will pass them on to Ed. By next week he should be able to be back on the computer at home and then you can e-mail him directly and he'll be able to keep up with you that way. His e-mail is eengelker5741@hotmail.com but just know that he doesn't check 'em every day right now, so it might take him some time to get back to you.
I'll post again after the doctor appointment tomorrow and getting settled at home and let you know if he can have visitors - we have to wait and see his white count first. Thanks for hanging in with us and sending such healing prayers and thoughts his way. It truly matters and means a lot.
Fortunately, the side-effects of the chemo have been pretty well controlled with the medications - very little diarrhea or vomiting, some nausea, mostly just exhausted and the expected drop in blood counts, etc. It's really best described as just feeling "icky, crummy" (true medical terminology). We go back to Dr. Menco tomorrow for blood work to check on everything.....and hopefully we'll move back to the house after that. It's been wonderful at Lou's, but I'm sure she's anxious to have her place back and I know Ed is anxious to sleep in his own bed again. It's been 6 long weeks.......
The mail was full of cards again last night and I took them all to Ed and I'm sure he'll be opening them today. He loves getting the awesome messages from the blog as well. I know some of you are frustrated with not being able to post, so feel free to send e-mails to me at emeraldcityliz@gmail.com
and I will pass them on to Ed. By next week he should be able to be back on the computer at home and then you can e-mail him directly and he'll be able to keep up with you that way. His e-mail is eengelker5741@hotmail.com but just know that he doesn't check 'em every day right now, so it might take him some time to get back to you.
I'll post again after the doctor appointment tomorrow and getting settled at home and let you know if he can have visitors - we have to wait and see his white count first. Thanks for hanging in with us and sending such healing prayers and thoughts his way. It truly matters and means a lot.
Tuesday, March 22, 2011
6:05 PM Tuesday March 22, 2011
We just got home from Ed's appointment with Dr. Menco. All is going fine, no surprises. Patty changed the needle in his access port (has to be done every 7 days) and they drew blood. Because Dr. Menco is a hemotology oncologist, they have all the equipment there to get certain blood test results on the spot instead of waiting for a lab. Ed's white and red counts are dropping pretty dramatically (as expected) so he did get the Nulasta shot (a 2-week equavalent of the daily Nupagen shots Ed got in the hospital) to stimulate white cells. They said he may have some bone pain in his back, hips, shoulders or chest plate but we have pain meds in case.
So far it's been a good day - while I was at work, Ed and his Mom went for a walk around the neighborhood today - it was such a gorgeous day and I'm glad he felt like getting out before the rains come back.... Ed felt just a little crummy about the time we left for the doctor, but now he's just feeling tired so he's relaxing in the lounge chair with ....... you guessed it....... FOX news. I'm going to have to fight for the remote to get my Jeopardy fix tonight, but will try to tempt him with a promise of Bill O'Reilly again at 8 PM. If he falls asleep, I may take matters into my own hands and try to wrestle the remote from his clutches. That usually doesn't work very well.......
We go back to the doctor on Friday morning for another blood count and that will determine the weekend visitor situation. They want to monitor him every couple of days right now, so I'll let you know Friday afternoon about that. Meanwhile, he's just resting and wearing a nice soft beanie to keep his chrome dome warm. Very hip.
So far it's been a good day - while I was at work, Ed and his Mom went for a walk around the neighborhood today - it was such a gorgeous day and I'm glad he felt like getting out before the rains come back.... Ed felt just a little crummy about the time we left for the doctor, but now he's just feeling tired so he's relaxing in the lounge chair with ....... you guessed it....... FOX news. I'm going to have to fight for the remote to get my Jeopardy fix tonight, but will try to tempt him with a promise of Bill O'Reilly again at 8 PM. If he falls asleep, I may take matters into my own hands and try to wrestle the remote from his clutches. That usually doesn't work very well.......
We go back to the doctor on Friday morning for another blood count and that will determine the weekend visitor situation. They want to monitor him every couple of days right now, so I'll let you know Friday afternoon about that. Meanwhile, he's just resting and wearing a nice soft beanie to keep his chrome dome warm. Very hip.
1:20 PM Tuesday, March 23, 2011
I can't believe how quickly March is flying by. Just a quick update and then I'll be back later after the doctor appt to let you know of any news we get while we're there......Ed slept so well last night - I think the best night's sleep he's had in 6 weeks. We got his meds balanced out yesterday and got the schedule adjusted so I can give him most everything around 10:30 PM and not have anything else to both him with until 5:30 AM. I get up at that time to get ready for work anyway, so we both get almost 7 hours of time without medication disturbances. It worked really well and I'm so hoping it continues! He felt really good when he woke up this morning.....yeah!!!!
Stopped by home at lunchtime today and the bathroom is finished!!!!!! Tadah!!! It looks amazing - Ryan and Aaron were up late last night finishing the plumbing stuff - new toilet, faucets, shower fixtures, etc. and it's just beautiful. Don't know how I can say thank you in a way that conveys enough...to all of you who have had a hand in the project, I'm saying thank you more than you know.
Okay, vents and duct work being cleaned today.....check. Cleaning crew will be done by tomorrow afternoon... check. Carpets being cleaned tomorrow.... check. Bedding has all been sanitized ... check. and Tyler has been busy cleaning up the backyard and gutters from the storm and getting all the construction trash cleaned up... check. My plan is to bring Ed home Thursday after work, so I'll be dashing off to get new towels, rugs and bathroom accessories tonight or tomorrow night... check. I want to have everything perfect for his homecoming - it's been such a long haul. After we talk to the doctor, I'll let you all know about visiting......stay tuned.
Stopped by home at lunchtime today and the bathroom is finished!!!!!! Tadah!!! It looks amazing - Ryan and Aaron were up late last night finishing the plumbing stuff - new toilet, faucets, shower fixtures, etc. and it's just beautiful. Don't know how I can say thank you in a way that conveys enough...to all of you who have had a hand in the project, I'm saying thank you more than you know.
Okay, vents and duct work being cleaned today.....check. Cleaning crew will be done by tomorrow afternoon... check. Carpets being cleaned tomorrow.... check. Bedding has all been sanitized ... check. and Tyler has been busy cleaning up the backyard and gutters from the storm and getting all the construction trash cleaned up... check. My plan is to bring Ed home Thursday after work, so I'll be dashing off to get new towels, rugs and bathroom accessories tonight or tomorrow night... check. I want to have everything perfect for his homecoming - it's been such a long haul. After we talk to the doctor, I'll let you all know about visiting......stay tuned.
Monday, March 21, 2011
8:00 PM Monday March 21, 2011
Well, we made it home from UCLA today - back to Lou's for a few more days while the finishing touches are being put on the bathroom. I went by for a moment today, and it looks AMAZING! You'll all have to come by and get the grand tour when Ed starts receiving visitors!
Sunday afternoon, Ed had a notion to try and eat a little something more substantial than the clear liquids I've already mentioned. By the way, I don't think the broth should officially qualify as "clear" since it so closely resembles the cloudy residue washed out of aquarium filters, but I guess it's just a case of semantics....... anyway, we asked the doctor and he okayed Ed for a "mechanical soft" diet, whatever that means. No sooner had he authorized the upgrade, when the nurse came in with a printed menu that seemed more like room service than hospital food. We were directed to call the "food service" number and order whatever looked appealing from the choices. Apparently all the meals are made to order - no noisy food carts lumbering through the halls dispensing lukewarm fare destined to languish under plastic domes. We called the number, ordered chicken noodle soup, a grilled cheese sandwich and orange sherbet. About 12 minutes later, a nice young man dressed in a white starched shirt with black bow tie and black slacks, knocked on the door and presented a bed tray (with handles and a placemat) carrying the food choices into the room. He was as mannered as any room service waiter in a 5-star hotel! What a surprise. The soup was quite good, but the grilled cheese (on white bread) was cut up into little tiny cubes since the soft diet is apparently also for people with swallowing issues so they cut up the food like you would for a toddler. Kind of disappointing, but Ed ate most of the soup and some of the orange sherbet, so the meal was a success. He hasn't felt much like eating since, but it was a good start.
The chemo went well overall - no allergic reactions or unexpected difficulties. Again, it was a long day of transitioning so Ed is pretty wiped out tonight. So far the side effects have been suckey but not as overwhelming as they were after the last chemo. Ed has an appointment with Dr. Menco on Tuesday afternoon to get his Nulasta shot for the white blood cell stimulation and he'll probably give us blood work results as well. We hope the next few days will be restful and that the chemo will do it's work on the lymphoma. We are lucky to have had access to such a renowned facility and the staff of caring, hard-working and bright people. It was humbling to say the least.
It's time for bed - Ed is sleeping peacefully with his TPN "midnight snack" so I'll close for now.
P.S.: Wasn't the rain on Sunday INCREDIBLE????? Every room at the Reagan UCLA Medical Center has a view of something "green" (trees, grass, etc.) and we watched the rain beating on the window all day against a backdrop of trees and park-like plazas with balcony planters of cascading foliage. Very pretty (hey, I'm from Seattle, so I can appreciate rain now and then). It certainly kept the on-call guys super busy at the shop and more is promised for the rest of this week. We'll all have to break out the hot chocolate and tea.
Back tomorrow......stay warm and dry.....
Sunday afternoon, Ed had a notion to try and eat a little something more substantial than the clear liquids I've already mentioned. By the way, I don't think the broth should officially qualify as "clear" since it so closely resembles the cloudy residue washed out of aquarium filters, but I guess it's just a case of semantics....... anyway, we asked the doctor and he okayed Ed for a "mechanical soft" diet, whatever that means. No sooner had he authorized the upgrade, when the nurse came in with a printed menu that seemed more like room service than hospital food. We were directed to call the "food service" number and order whatever looked appealing from the choices. Apparently all the meals are made to order - no noisy food carts lumbering through the halls dispensing lukewarm fare destined to languish under plastic domes. We called the number, ordered chicken noodle soup, a grilled cheese sandwich and orange sherbet. About 12 minutes later, a nice young man dressed in a white starched shirt with black bow tie and black slacks, knocked on the door and presented a bed tray (with handles and a placemat) carrying the food choices into the room. He was as mannered as any room service waiter in a 5-star hotel! What a surprise. The soup was quite good, but the grilled cheese (on white bread) was cut up into little tiny cubes since the soft diet is apparently also for people with swallowing issues so they cut up the food like you would for a toddler. Kind of disappointing, but Ed ate most of the soup and some of the orange sherbet, so the meal was a success. He hasn't felt much like eating since, but it was a good start.
The chemo went well overall - no allergic reactions or unexpected difficulties. Again, it was a long day of transitioning so Ed is pretty wiped out tonight. So far the side effects have been suckey but not as overwhelming as they were after the last chemo. Ed has an appointment with Dr. Menco on Tuesday afternoon to get his Nulasta shot for the white blood cell stimulation and he'll probably give us blood work results as well. We hope the next few days will be restful and that the chemo will do it's work on the lymphoma. We are lucky to have had access to such a renowned facility and the staff of caring, hard-working and bright people. It was humbling to say the least.
It's time for bed - Ed is sleeping peacefully with his TPN "midnight snack" so I'll close for now.
P.S.: Wasn't the rain on Sunday INCREDIBLE????? Every room at the Reagan UCLA Medical Center has a view of something "green" (trees, grass, etc.) and we watched the rain beating on the window all day against a backdrop of trees and park-like plazas with balcony planters of cascading foliage. Very pretty (hey, I'm from Seattle, so I can appreciate rain now and then). It certainly kept the on-call guys super busy at the shop and more is promised for the rest of this week. We'll all have to break out the hot chocolate and tea.
Back tomorrow......stay warm and dry.....
Sunday, March 20, 2011
9:15 AM Sunday, March 20, 2011
It's already Sunday morning and Ed just finished the 2nd dose of the 4-part chemo that he's scheduled to receive here at UCLA this trip. My postings will be a little less frequent while we're here - UCLA has a wi-fi set-up that requires you to use their internet connection and it renders all others unavailable. My laptop is set up with shortcut icons (thanks to our Lloyd's Plumbing technology wizard Anthony) that have made it easy for me to log-in and post, but now I have to track down a nurse's aid and get a log-in & password, etc. to get these postings up.
Yesterday was filled with lots of getting acclimated - new staff, new surroundings, new procedures etc. It's a big complex and a little intimidating. Dr. Devos came in yesterday around noon - he was amazing. Because UCLA is a teaching hospital the doctors here are used to spending lots of time explaining and "teaching" patients, interns, residents and "fellows" - the doctors who are in their final months of school. He spent quite a long time explaining the mantle cell lymphoma, the various options available for treatment, expected outcomes, philosophical reasons for choosing certain protocols, and research trends and the future of treatments, etc. Because we've had some time to digest some of the early information, it all made much more sense after talking with him - he put the pieces of the puzzle together in a way that formed a mental picture for Ed that he said he hadn't had before. Even though there's a lot going on and Ed's really starting to feel the 4 walls closing in, he feels very well cared.
Ed tolerated the second round of Rituxan pretty well, but he slept quite a bit yesterday and so was up a lot during the night last night. He was really tired of sleeping in the hospital bed, so he had me sleep in the patient bed and he slept on the couch by the window. I think he just wanted to feel a little normal. He used our portable DVD player and watched a movie around 2 AM - DUE DATE was the movie, which he said to tell you all he didn't think was very funny. (I'm happy that I slept in the patient bed off and on and not once did I wake up to find someone starting an IV or checking my blood pressure - they kept good track of where Ed was at all times!) We did see a good movie on TV yesterday that we'd never seen before - "SHIPPING NEWS" with Kevin Spacey, Julianne Moore and Judi Dench. Very touching story.
My daughter Stacy and son-in-law Gary came by yesterday from Valencia with their3 little ones and we visited for a little over an hour downstairs in the commons area and had a snack. My 4-year old grandson Luke brought Ed 3 matchbox cars from his collection so Ed would have something to play with (a GTO among them!) and my 3-year old granddaughter Hope is learning to use scissors, so they cut him a bouquet of craft foam flowers with pipe cleaner stems and put them in a baby-food jar donated by little brother Cade. It's adorable and brightens his room since he can't have live plants or flowers. They also brought us snacks and drinks (we have a small 'fridge in the room) and Ed enjoyed a Ritz cracker, a few sips of Gatorade and a life saver. Thanks Haggart family - for the treats and for making the drive! It's a godsend to have food in the room since it's hard to my crdimypredict when will be a convenient time to go out in search of food. Ed's "clear liquid diet" tray consists of a chamomile tea bag, cup of lukewarm water, the ever-present hospital jello, and a bowl of "broth" that Ed says would make even an Ethiopian turn up his nose!
Ed wanted me to let you all know that it's a good thing we're married because I've now violated one of my cardinal dating rules, which have always been: "Never date a man with better hair, bigger boobs or a smaller butt". Ed says he may just have crossed the line with the butt thing, given the fact that he now weighs the equivalent of just over 62 kilos of marijuana. (You all thought he was going to say the hair thing, right????) Those are Ed's contributions for today.
Hopefully today, we will get a few things turned around. Because Ed was off of his TPN for 36 hours while we transitioned into a new facility, when they put him back on the TPN, his blood sugar spiked to 265 and they had to give him insulin during the night. They have adjusted the TPN schedule, and the tapering on and off times, so that should correct itself by this afternoon. His red blood count dropped from 11.5 on Friday to 5.0 this morning, so he will be getting 2 units of blood in the next couple of hours, then the next ARA-C chemo around 3 PM this afternoon. It's a bit of an endless game of dominoes as each treatment sets up issues, they correct those, then those corrections set up other issues. All of it has been anticipated, so we're not dealing with surprises, just circumstances that come with the territory. They are well prepred and respond very quickly. The diarrhea that had taken a 4-day vacation, has returned today, but the nurses are hot on the trail already with meds. Ed is resting comfortably. (It's 10:45 AM now - I have to stop typing frequently to respond to Ed and the endless procession of doctors, interns, nurses, lab people, pharmacists -who actually come to your room and discuss the meds!, housekeeping, cafeteria, and paperwork people who come in, then I get "timed out" of the log-in and have to start over.)
Once they get the blood transfusion hooked up, I will go to the guest floor where I have to shower and change. They don't allow any showers for patients or guests in these rooms - because of the LA River source for their water here, they have found bacteria in the airborne water mist, which is not a problem for a person with a healthy immune system. But because everyone on this unit is receiving chemo, they have set up procedures to prevent the possibility of infection from that by instituting a "no showering in these rooms" rule. Ed can take a bath, but a nurse's aid has to draw the water in the bathroom with the door closed and wait 5 minutes for the water vapor mist (steam) to be vented out before Ed can go in the bathroom and get in the tub. Everything in the room is sanitized twice a day - they are pretty serious about keeping infection risk to a minimum.
Well, now it's 11:15 and Dr. Devos just came in. Ed questioned him about the origin of this cancer and his answer was very interesting. He explained about the immune system and how it sometimes makes "mistakes" when trying to make anti-bodies to fight off foreign bodies (infections, viruses, etc.) as well as the suspected toxicology component for this type of cancer. Research hasn't identified a very specific source yet, but they suspect that benzine components, radiation and some pesticide ingredients are likely at the center of most cancers, but more research is needed to determine exactly which ones, in what quantity and when present with what other factors do they manifest into a cancer like this one. It's still a mystery, but they are getting closer to finding out the answers.
Ed is back to sleep after the doctor visit, so I'll go shower now. I'll let you know how he's doing later today.
Yesterday was filled with lots of getting acclimated - new staff, new surroundings, new procedures etc. It's a big complex and a little intimidating. Dr. Devos came in yesterday around noon - he was amazing. Because UCLA is a teaching hospital the doctors here are used to spending lots of time explaining and "teaching" patients, interns, residents and "fellows" - the doctors who are in their final months of school. He spent quite a long time explaining the mantle cell lymphoma, the various options available for treatment, expected outcomes, philosophical reasons for choosing certain protocols, and research trends and the future of treatments, etc. Because we've had some time to digest some of the early information, it all made much more sense after talking with him - he put the pieces of the puzzle together in a way that formed a mental picture for Ed that he said he hadn't had before. Even though there's a lot going on and Ed's really starting to feel the 4 walls closing in, he feels very well cared.
Ed tolerated the second round of Rituxan pretty well, but he slept quite a bit yesterday and so was up a lot during the night last night. He was really tired of sleeping in the hospital bed, so he had me sleep in the patient bed and he slept on the couch by the window. I think he just wanted to feel a little normal. He used our portable DVD player and watched a movie around 2 AM - DUE DATE was the movie, which he said to tell you all he didn't think was very funny. (I'm happy that I slept in the patient bed off and on and not once did I wake up to find someone starting an IV or checking my blood pressure - they kept good track of where Ed was at all times!) We did see a good movie on TV yesterday that we'd never seen before - "SHIPPING NEWS" with Kevin Spacey, Julianne Moore and Judi Dench. Very touching story.
My daughter Stacy and son-in-law Gary came by yesterday from Valencia with their3 little ones and we visited for a little over an hour downstairs in the commons area and had a snack. My 4-year old grandson Luke brought Ed 3 matchbox cars from his collection so Ed would have something to play with (a GTO among them!) and my 3-year old granddaughter Hope is learning to use scissors, so they cut him a bouquet of craft foam flowers with pipe cleaner stems and put them in a baby-food jar donated by little brother Cade. It's adorable and brightens his room since he can't have live plants or flowers. They also brought us snacks and drinks (we have a small 'fridge in the room) and Ed enjoyed a Ritz cracker, a few sips of Gatorade and a life saver. Thanks Haggart family - for the treats and for making the drive! It's a godsend to have food in the room since it's hard to my crdimypredict when will be a convenient time to go out in search of food. Ed's "clear liquid diet" tray consists of a chamomile tea bag, cup of lukewarm water, the ever-present hospital jello, and a bowl of "broth" that Ed says would make even an Ethiopian turn up his nose!
Ed wanted me to let you all know that it's a good thing we're married because I've now violated one of my cardinal dating rules, which have always been: "Never date a man with better hair, bigger boobs or a smaller butt". Ed says he may just have crossed the line with the butt thing, given the fact that he now weighs the equivalent of just over 62 kilos of marijuana. (You all thought he was going to say the hair thing, right????) Those are Ed's contributions for today.
Hopefully today, we will get a few things turned around. Because Ed was off of his TPN for 36 hours while we transitioned into a new facility, when they put him back on the TPN, his blood sugar spiked to 265 and they had to give him insulin during the night. They have adjusted the TPN schedule, and the tapering on and off times, so that should correct itself by this afternoon. His red blood count dropped from 11.5 on Friday to 5.0 this morning, so he will be getting 2 units of blood in the next couple of hours, then the next ARA-C chemo around 3 PM this afternoon. It's a bit of an endless game of dominoes as each treatment sets up issues, they correct those, then those corrections set up other issues. All of it has been anticipated, so we're not dealing with surprises, just circumstances that come with the territory. They are well prepred and respond very quickly. The diarrhea that had taken a 4-day vacation, has returned today, but the nurses are hot on the trail already with meds. Ed is resting comfortably. (It's 10:45 AM now - I have to stop typing frequently to respond to Ed and the endless procession of doctors, interns, nurses, lab people, pharmacists -who actually come to your room and discuss the meds!, housekeeping, cafeteria, and paperwork people who come in, then I get "timed out" of the log-in and have to start over.)
Once they get the blood transfusion hooked up, I will go to the guest floor where I have to shower and change. They don't allow any showers for patients or guests in these rooms - because of the LA River source for their water here, they have found bacteria in the airborne water mist, which is not a problem for a person with a healthy immune system. But because everyone on this unit is receiving chemo, they have set up procedures to prevent the possibility of infection from that by instituting a "no showering in these rooms" rule. Ed can take a bath, but a nurse's aid has to draw the water in the bathroom with the door closed and wait 5 minutes for the water vapor mist (steam) to be vented out before Ed can go in the bathroom and get in the tub. Everything in the room is sanitized twice a day - they are pretty serious about keeping infection risk to a minimum.
Well, now it's 11:15 and Dr. Devos just came in. Ed questioned him about the origin of this cancer and his answer was very interesting. He explained about the immune system and how it sometimes makes "mistakes" when trying to make anti-bodies to fight off foreign bodies (infections, viruses, etc.) as well as the suspected toxicology component for this type of cancer. Research hasn't identified a very specific source yet, but they suspect that benzine components, radiation and some pesticide ingredients are likely at the center of most cancers, but more research is needed to determine exactly which ones, in what quantity and when present with what other factors do they manifest into a cancer like this one. It's still a mystery, but they are getting closer to finding out the answers.
Ed is back to sleep after the doctor visit, so I'll go shower now. I'll let you know how he's doing later today.
Friday, March 18, 2011
10 PM Friday, March 18, 2011
Greetings from Reagan UCLA Medical Center - Room 6159! We FINALLY made it into the room around 7:30 PM after being here since noon today! Very frustrating admission process (too long and uneventful to explain) but we are happy to finally be here in the room. Things have gone quickly since we got settled - the nurses and staff are SUPER attentive and everything actually happens much faster than it did at Los Robles (except the admission!). Ed had a chest x-ray a few minutes ago to make sure his porta-cath is still okay (it's been hurting him for a couple of days). They will start another dose of the Rituxan in a little while and then the ARA-C tomorrow, with a total of 4 doses over four 12-hour periods. That puts us here until late Sunday night or early Monday morning. We were kind of surprised when they weighed him tonight - 134 pounds, but hopefully that will start to come up as soon as he is able to eat again. We've decided we'll become serious foodies and schedule another trip through the Pacific Northwest, since we ate such insanely delicious food on our last trip there with Leo and Georgette.
That's all the news for tonight. We're both exhausted from waiting in the lobby all day - it's actually quite tiring to just sit and wait and sit and wait and sit and wait! But the facility is absolutely beautiful (it's only 3 years old) and my daughter Jennifer came by for a half hour or so this afternoon and sat with us. She is an excellent "tour guide" and gave me in the inside scoop on navigating the parking, outdoor gardens, Starbucks and good restaurants. The "cafeteria" here is amazing - huge and full of hundreds of choices of hot and cold food, kosher food, salad bar, dessert bar, vending machines, ice cream and frozen yogurts, soups, pastas, etc. It's amazing how many people they feed here everyday! We're right in the heart of Westwood, so I may take a walk if Ed is feeling okay and resting comfortably tomorrow afternoon.
I'll let you all know how he's doing later on Saturday. Thanks for your comments and messages. We read the blog comments every day!
That's all the news for tonight. We're both exhausted from waiting in the lobby all day - it's actually quite tiring to just sit and wait and sit and wait and sit and wait! But the facility is absolutely beautiful (it's only 3 years old) and my daughter Jennifer came by for a half hour or so this afternoon and sat with us. She is an excellent "tour guide" and gave me in the inside scoop on navigating the parking, outdoor gardens, Starbucks and good restaurants. The "cafeteria" here is amazing - huge and full of hundreds of choices of hot and cold food, kosher food, salad bar, dessert bar, vending machines, ice cream and frozen yogurts, soups, pastas, etc. It's amazing how many people they feed here everyday! We're right in the heart of Westwood, so I may take a walk if Ed is feeling okay and resting comfortably tomorrow afternoon.
I'll let you all know how he's doing later on Saturday. Thanks for your comments and messages. We read the blog comments every day!
Thursday, March 17, 2011
8 PM Thursday, March 17, 2011
What a busy day! Ed came home from Los Robles today and we got re-settled at Lou's house, unpacking all the hospital belongings and getting everything re-organized and at the ready for UCLA. The doctor who will be caring for Ed while we're there called today and told me there is a huge waiting list for the first available bed, but we're at the top of the list and to stand by and drive over as soon as the call comes. Not sure when it will be, so we have everything ready. Hopefully it will be Friday. (Seems a little like the packing and stand-by routine that expecting parents go through.)
Ed did much better with the Rituxan yesterday than he did the day before with the test dose. Dr. Menco says thats why they give a test dose - to give the body a chance to get used to it and not react so violently the second time. His white count went down by 50% today, but we were expecting it and know it will come back, just like last time. Lots of hand washing, sanitizer and alcohol wipes going on here!
The home health care nurse just left and she was able to help with the painful butterfly needle in the port - it's been bothersome all day. Ed's back on the TPN hyperalimentation and his other meds -- he's smiling now as he watches his favorite show AFTER the Factor ......... WIPEOUT! Certainly at two opposite ends of the intellectual spectrum, don'tcha think?????? I'm really hoping we're back on our usual recreating schedule of motorcycle riding, RVing and boating LONG before he discovers Jerry Springer and soap operas! Let's Make a Deal has already become a daytime favorite, which I have to put up with given my own game show penchant for Jeopardy and Wheel of Fortune.
Our big news of the day....... don't be afraid...... Ed had two teaspoons of chicken noodle soup broth and a quarter of a graham cracker today. It's the first food he's eaten in 5 weeks, so that's good news. We're going to keep working on that a little each day.
Lou just brought out some soup and sandwiches, so I'll log off for tonight. I'll be back tomorrow.
Liz
Ed did much better with the Rituxan yesterday than he did the day before with the test dose. Dr. Menco says thats why they give a test dose - to give the body a chance to get used to it and not react so violently the second time. His white count went down by 50% today, but we were expecting it and know it will come back, just like last time. Lots of hand washing, sanitizer and alcohol wipes going on here!
The home health care nurse just left and she was able to help with the painful butterfly needle in the port - it's been bothersome all day. Ed's back on the TPN hyperalimentation and his other meds -- he's smiling now as he watches his favorite show AFTER the Factor ......... WIPEOUT! Certainly at two opposite ends of the intellectual spectrum, don'tcha think?????? I'm really hoping we're back on our usual recreating schedule of motorcycle riding, RVing and boating LONG before he discovers Jerry Springer and soap operas! Let's Make a Deal has already become a daytime favorite, which I have to put up with given my own game show penchant for Jeopardy and Wheel of Fortune.
Our big news of the day....... don't be afraid...... Ed had two teaspoons of chicken noodle soup broth and a quarter of a graham cracker today. It's the first food he's eaten in 5 weeks, so that's good news. We're going to keep working on that a little each day.
Lou just brought out some soup and sandwiches, so I'll log off for tonight. I'll be back tomorrow.
Liz
Wednesday, March 16, 2011
3:45 PM Wednesday, March 16, 2011
Whew.... wasn't sure I was going to make it back to the computer today, what with all the running around trying to find someone to bronze the T.......just kidding. Enough of that, although we do thank you for your comments and smiles. We've been the buzz of the nursing staff.....up until now, we've been trying to request our faves, but now it seems the nursing staff is fighting over wanting to get assigned to us!
Alas, they are going to have a wider circle of nurses to fight with though, because it looks like Friday we will be off to UCLA! Dr. Menco called in some favors and got one of his associates there to make some ARA-C available to Ed - that's the chemo drug we've been trying to find. It was pre-reserved for someone else, but Dr. Menco prevailed and we're waiting for word on a bed to become available, which is likely going to be Friday. Yeah! We will get some additional "inside" help from my oldest daughter who is a neurology pharmaceutical rep who navigates the intricacies of UCLA every day, all day as her territory. I'll be glad for the help as that place is GI-NORMOUS (bigger than giant and enormous!). We will probably be there for 3-4 days getting back on track with the chemotherapy.
Meanwhile, Ed is, as I write, getting the Rituxan chemo. It's been going for almost 2 hours now and it will take another 2 or 3 hours to finish, as they are giving it extremely slowly since he had a pretty tough reaction last night to the test dose. He's okay so far and they've given him some pre-medications to help. We have an awesome nurse today and she's super-attentive, so that feels good. If all goes well, we may go home late tonight or early tomorrow, but only if he's feeling up to it. Ed is still on the visitors ban because these chemos will knock his white count severely down again, but we're just trying to do everything we're told. I guess we're all getting used to the solitude for now.
I'll jump off for now and get back to the blog later.
Liz
Alas, they are going to have a wider circle of nurses to fight with though, because it looks like Friday we will be off to UCLA! Dr. Menco called in some favors and got one of his associates there to make some ARA-C available to Ed - that's the chemo drug we've been trying to find. It was pre-reserved for someone else, but Dr. Menco prevailed and we're waiting for word on a bed to become available, which is likely going to be Friday. Yeah! We will get some additional "inside" help from my oldest daughter who is a neurology pharmaceutical rep who navigates the intricacies of UCLA every day, all day as her territory. I'll be glad for the help as that place is GI-NORMOUS (bigger than giant and enormous!). We will probably be there for 3-4 days getting back on track with the chemotherapy.
Meanwhile, Ed is, as I write, getting the Rituxan chemo. It's been going for almost 2 hours now and it will take another 2 or 3 hours to finish, as they are giving it extremely slowly since he had a pretty tough reaction last night to the test dose. He's okay so far and they've given him some pre-medications to help. We have an awesome nurse today and she's super-attentive, so that feels good. If all goes well, we may go home late tonight or early tomorrow, but only if he's feeling up to it. Ed is still on the visitors ban because these chemos will knock his white count severely down again, but we're just trying to do everything we're told. I guess we're all getting used to the solitude for now.
I'll jump off for now and get back to the blog later.
Liz
Tuesday, March 15, 2011
5:15 PM Tuesday, March 15, 2011
Thanks, Tom for all the postings, and for the pepperoni pizza wedding cake idea....... brilliant.......and every bit as traditional as the other aspects of our wedding ........ you know Ed well!
Congratulations to your beautiful daugher Melissa. We will be honored to quietly celebrate our first anniversary at her wedding.
Congratulations to your beautiful daugher Melissa. We will be honored to quietly celebrate our first anniversary at her wedding.
4 PM Tuesday, March 15, 2011
We are settled in here at Club Dread (Los Robles hospital oncology unit) but have met up with some of the nurses we vacationed with on our last trip here, so it's been a bit of a reunion. I guess I should post a VIEWER DISCRETION WARNING at this point, as we've both been bitten with the sarcastic humor bug today. We'll check the "steps" later to see where this coping mechanism fits in, but it's working for us today.
We went to bed emotionally prepared for the day today (it's a very weird feeling to VOLUNTARILY sign up for and drive to a location where you will be intentionally poisoned). We woke up to a phone call from the nurse explaining that one of the main chemo drugs Ed was scheduled to receive today is .... hold onto your hats ........on NATIONAL BACKORDER and unavailable until the end of the month! (Dr. Menco wasn't notified until 9 PM last night.) I immediately called City of Hope but Dr. Menco had beat me to the punch, along with UCLA and several other cancer treatment centers. NO DICE. We reported to the hospital anyway and Dr. Menco met us to explain how we will proceed.
Ed is having a CAT scan right now to determine how effective the previous chemo has been. When he gets back to the room, they will administer the Rituxan chemo test dose. Because the Rituxan is so aggressive, they will watch his reaction and if all goes well, finish the dose tomorrow late afternoon. If the CAT scan results show that improvement was made with the previous combination of chemo drugs, Dr. Menco will repeat a treatment of those in some modified formula this week. He'll decide tomorrow with the folks from City of Hope looking at the results together.
Meanwhile, AND HERE'S WHERE THE VIEWER DISCRETION KICKS IN... we've been celebrating a monumental event.....and I don't mean the wedding. For those of you who appreciate Ed's sense of humor, read on. Otherwise, I guess you'll read on and chalk it up to garden-variety curiosity. After more than 8 months (yes 8 months!) of continuous and often rampant diarrhea, Ed produced a small, well-formed (?) turd this morning. In a hasty move, undoubtedly the result of successful childhood toilet training, he hastily flushed it away like a week-old carnival goldfish. Regrettable, in hindsight.
When we were going through the routine police-like interrogation that accompanies all hospital admissions, Ed and I and the nurse all agreed that the appearance of the aforementioned turd was absolute cause for celebration. Then, as mental exhaustion and sleep deprevation often can do, Ed and I both got a serious case of the giggles and decided not only should we celebrate the turd, but given the opportunity, we should protect it, perhaps bronze it and put it on the mantle next to the baby shoes.... or perhaps make a donaton to the hospital so significant that they would be forced to allow us to set up some type of shrine or display in the visitor's lobby. DON'T SAY I DIDN'T WARN YOU....... We laughed until we cried..... which was a wonderful feeling, since mostly, we've been crying til we cry some more!
Well, right on cue, they just brought Ed back from downstairs, so I'll jump off the blog and get the TV warmed up for the Factor in 10 minutes. I also have to adjust the window blinds, plump his pillows and post the appropriate "You Are Entering The No-Spin Zone" signage on the door.....and these things take time.
I promise to post more info soon, and hopefully there will still be at least a small number of you left who are brave enough to log on and read the next post.
One last thing I wanted to mention - we picked up a book yesterday in Dr. Menco's office titled "I'd Rather Do Chemo Than Clean Out My Garage". I'm going to try and download it to my Kindle later tonight cause we realize that humor is going to be a big part of hanging on through this. We hope you all understand how important it is to us to be able to laugh. It probably feels a little strange, but we're going to use ALL the tools we can find to forge ahead....... and it's uphill both directions.
We both hope you will laugh with someone you love today.
We went to bed emotionally prepared for the day today (it's a very weird feeling to VOLUNTARILY sign up for and drive to a location where you will be intentionally poisoned). We woke up to a phone call from the nurse explaining that one of the main chemo drugs Ed was scheduled to receive today is .... hold onto your hats ........on NATIONAL BACKORDER and unavailable until the end of the month! (Dr. Menco wasn't notified until 9 PM last night.) I immediately called City of Hope but Dr. Menco had beat me to the punch, along with UCLA and several other cancer treatment centers. NO DICE. We reported to the hospital anyway and Dr. Menco met us to explain how we will proceed.
Ed is having a CAT scan right now to determine how effective the previous chemo has been. When he gets back to the room, they will administer the Rituxan chemo test dose. Because the Rituxan is so aggressive, they will watch his reaction and if all goes well, finish the dose tomorrow late afternoon. If the CAT scan results show that improvement was made with the previous combination of chemo drugs, Dr. Menco will repeat a treatment of those in some modified formula this week. He'll decide tomorrow with the folks from City of Hope looking at the results together.
Meanwhile, AND HERE'S WHERE THE VIEWER DISCRETION KICKS IN... we've been celebrating a monumental event.....and I don't mean the wedding. For those of you who appreciate Ed's sense of humor, read on. Otherwise, I guess you'll read on and chalk it up to garden-variety curiosity. After more than 8 months (yes 8 months!) of continuous and often rampant diarrhea, Ed produced a small, well-formed (?) turd this morning. In a hasty move, undoubtedly the result of successful childhood toilet training, he hastily flushed it away like a week-old carnival goldfish. Regrettable, in hindsight.
When we were going through the routine police-like interrogation that accompanies all hospital admissions, Ed and I and the nurse all agreed that the appearance of the aforementioned turd was absolute cause for celebration. Then, as mental exhaustion and sleep deprevation often can do, Ed and I both got a serious case of the giggles and decided not only should we celebrate the turd, but given the opportunity, we should protect it, perhaps bronze it and put it on the mantle next to the baby shoes.... or perhaps make a donaton to the hospital so significant that they would be forced to allow us to set up some type of shrine or display in the visitor's lobby. DON'T SAY I DIDN'T WARN YOU....... We laughed until we cried..... which was a wonderful feeling, since mostly, we've been crying til we cry some more!
Well, right on cue, they just brought Ed back from downstairs, so I'll jump off the blog and get the TV warmed up for the Factor in 10 minutes. I also have to adjust the window blinds, plump his pillows and post the appropriate "You Are Entering The No-Spin Zone" signage on the door.....and these things take time.
I promise to post more info soon, and hopefully there will still be at least a small number of you left who are brave enough to log on and read the next post.
One last thing I wanted to mention - we picked up a book yesterday in Dr. Menco's office titled "I'd Rather Do Chemo Than Clean Out My Garage". I'm going to try and download it to my Kindle later tonight cause we realize that humor is going to be a big part of hanging on through this. We hope you all understand how important it is to us to be able to laugh. It probably feels a little strange, but we're going to use ALL the tools we can find to forge ahead....... and it's uphill both directions.
We both hope you will laugh with someone you love today.
Monday, March 14, 2011
Monday March 14, 2011 10PM
I know it's late and many of you have been waiting for an update - we had a very busy day - saw Dr. Menco at 9:30 and everything is a go for tomorrow. He said it will be a knock-down but not a knock-out, so we're getting into fighting stance. I suddenly had a flash of the old campfire chant many of us oldies will remember - "Goin' on a bear hunt......... can't go over it, cant' go under it, can't go around it" ....just gotta go through it".....and we will. Our resting time at Lou's has been wonderful and we'd love to stay.....but tomorrow we're back in the chemo saddle and the first round-up is at noon. It will be a series of 4 two-hour doses, spaced out over 4 12-hour periods. The past 2 days have been much better - no vomiting at all today, and only one episode yesterday....so Ed knows there is a point where he will feel better each time, it was just a long haul to get here. I'm not sure how long Ed will be in the hospital this time, but Dr. Menco says he will probably do a new CAT scan a few days after the first dose so we can see if the chemo is "melting" the lymphoma in the lymph nodes (his words). Once that starts to happen, he feels it will be a matter of a short time and the intestines will start to heal and function and Ed will be able to try eating again. That will be a great day. Ed is so looking forward to a pepperoni pizza, he can almost "taste" it in his IV!
He's sleeping now and I'd like to curl up next to him, so I'll jump off the blog until tomorrow. After all, we're really still on our honeymoon.........yes, we got married very quietly and beautifully on Lou's patio last Thursday at 4:30 in the afternoon with the sun setting and a gentle breeze carrying the scent of the star jasmine through the air. It was just Ed and I, Lou and our Baptist biker preacher and it was perfect. We wanted to have a few days before we announced it, so you are all finding out together. Actually I think it's taken Ed 4 days to get all of the syllables of the word "married" to come out together - :) We decided at 4:30 AM on Thursday morning thatTHAT would be the day, and it was. And it is. And we're happy.
He's sleeping now and I'd like to curl up next to him, so I'll jump off the blog until tomorrow. After all, we're really still on our honeymoon.........yes, we got married very quietly and beautifully on Lou's patio last Thursday at 4:30 in the afternoon with the sun setting and a gentle breeze carrying the scent of the star jasmine through the air. It was just Ed and I, Lou and our Baptist biker preacher and it was perfect. We wanted to have a few days before we announced it, so you are all finding out together. Actually I think it's taken Ed 4 days to get all of the syllables of the word "married" to come out together - :) We decided at 4:30 AM on Thursday morning thatTHAT would be the day, and it was. And it is. And we're happy.
Sunday, March 13, 2011
11:25 PM Sunday, March 13, 2011
Just heading off to bed - that day light savings time change hasn't kicked in for me - I still feel like it's only 10:30 ....... had a couple of messages about the ride today - it's sounds like lots of people turned out and enjoyed the ride - looking forward to pics soon. Thanks Shelley for sending the text pic of you and Dee - we wished we could have been there today, but it really just gave all of you a little practice run for when we can get out again on the bikes together!
You can send pics to my emeraldcityliz@gmail.com account - it all comes up automatically when I sign onto the dashboard of the blog to post an update.
As soon as we return from the doctor appointment in the morning, I'll let you all know how and when the next step will happen. We had a pretty quiet day - watched a lot of "Chopped" and "Cupcake Wars" on the food channel and a few movies on Comedy Central. Paid bills, worked on tax returns, etc. Pretty much the usual stuff for a Sunday in March for us ...NOT! But it was a restful day and that's the goal right now. I have a hunch we're all in for a whirlwind when Ed gets this behind him!!
Sleep loose....as a dear friend of mine says......
Liz
You can send pics to my emeraldcityliz@gmail.com account - it all comes up automatically when I sign onto the dashboard of the blog to post an update.
As soon as we return from the doctor appointment in the morning, I'll let you all know how and when the next step will happen. We had a pretty quiet day - watched a lot of "Chopped" and "Cupcake Wars" on the food channel and a few movies on Comedy Central. Paid bills, worked on tax returns, etc. Pretty much the usual stuff for a Sunday in March for us ...NOT! But it was a restful day and that's the goal right now. I have a hunch we're all in for a whirlwind when Ed gets this behind him!!
Sleep loose....as a dear friend of mine says......
Liz
10:30 AM Sunday, March 13, 2011
Good morning. I didn't get to the blog yesterday - we had a quiet relaxing Saturday of watching movies, resting and being together. Ed is feeling better yesterday and today - the symptoms that have been so bothersome - the nausea, vomiting and diarrhea - have subsided quite a bit in the last 24 hours - so he doesn't need so many of the meds. He slept more organically yesterday - it was a natural sleep instead of induced by the drowsiness of the meds. No vomiting for 24 hours now - his usual afternoon bout was just a few waves of nausea that didn't go any further, thank goodness. It's such a beautiful day - I hope he'll be feeling like a short car ride today.
We will be going to Dr. Menco at 9:45 Monday morning and if all his labs are as expected, we anticipate the next round of chemo to start Tuesday. It will involve a hospital stay of 3-4 days with 4 chemo infusions - each one 2 hours long in a 12 hour period. It will be the same drugs they used in the first chemo, just in a different combination, with the addition of the Rituxan. It will be a rough few days, but I will keep you up to date daily. Now that we have some idea of how the side effects go and have experienced the commitment of the doctors and nurses armed with their arsenal of symtom management tools, it feels a little less frightening than the first time. He has come out the other side of the difficulty the past few days and that is encouraging- there is light at the end of the tunnel of tough side-effects.
Enjoy your Sunday - again, thanks for the cards that keep arriving. And Ed says thanks to Joann and Kevin who managed to find some Coors Light and Coors Original flannel PJ bottoms. We will be taking those to the hospital this week along with his Sponge-Bob Square-Pants and Garfield-on-a-Harley pjs. I wonder if there are flannel "Factor" pjs?????
Later all.
Liz
We will be going to Dr. Menco at 9:45 Monday morning and if all his labs are as expected, we anticipate the next round of chemo to start Tuesday. It will involve a hospital stay of 3-4 days with 4 chemo infusions - each one 2 hours long in a 12 hour period. It will be the same drugs they used in the first chemo, just in a different combination, with the addition of the Rituxan. It will be a rough few days, but I will keep you up to date daily. Now that we have some idea of how the side effects go and have experienced the commitment of the doctors and nurses armed with their arsenal of symtom management tools, it feels a little less frightening than the first time. He has come out the other side of the difficulty the past few days and that is encouraging- there is light at the end of the tunnel of tough side-effects.
Enjoy your Sunday - again, thanks for the cards that keep arriving. And Ed says thanks to Joann and Kevin who managed to find some Coors Light and Coors Original flannel PJ bottoms. We will be taking those to the hospital this week along with his Sponge-Bob Square-Pants and Garfield-on-a-Harley pjs. I wonder if there are flannel "Factor" pjs?????
Later all.
Liz
Friday, March 11, 2011
8:20 PM Friday, March 11, 2011
The weekend is finally here - we're looking forward to sleeping in tomorrow! Took Ed out for a ride in the car today - he was anxious to get out of the house again, so we stopped by the office to pick up his briefcase and then we picked up food at Wood Ranch for his Mom for dinner. That was enough activity - the pattern has become that he feels pretty good in the morning, reasonably okay into the early afternoon and by 4:00 the cycle of symptoms starts to really ramp up and is hard to get under control until about 8 PM. We did get some new pain medication today - a morphine elixir that he puts between his gums and inside of his cheek to absorb through his mouth. The nurses and doctor have been really working hard to make sure they try everything to find the right combination of meds to keep his symptoms as controlled as possible. A new home health care nurse came by tonight to draw blood for lab work so they can make sure he's getting everything he needs in the TPN.
Ed is sleeping pretty peacefully right now - he was quite entertaining for the nurse tonight and the comedy routine wore him out I think! His sense of humor is alive and well.
There's really nothing new to report today. It's great to be home with Ed and we're planning to relax and enjoy the weekend. We hope you have something wonderful planned for the next few days. Let us know - post a comment or send an e-mail. You can send an e-mail to my g-mail account at emeraldcityliz@gmail.com if you're having trouble with posting a comment on the blog.
Happy Friday!
Ed is sleeping pretty peacefully right now - he was quite entertaining for the nurse tonight and the comedy routine wore him out I think! His sense of humor is alive and well.
There's really nothing new to report today. It's great to be home with Ed and we're planning to relax and enjoy the weekend. We hope you have something wonderful planned for the next few days. Let us know - post a comment or send an e-mail. You can send an e-mail to my g-mail account at emeraldcityliz@gmail.com if you're having trouble with posting a comment on the blog.
Happy Friday!
Thursday, March 10, 2011
Thursday, March 10, 2011 10:00 PM
Just saw the comment about the ride on Sunday. It sounds wonderful - we'd love to be riding with you all. Can't wait to see the banner and photos - Ed will be very touched by your thoughts and toasts! Thanks to Melia for her awesome idea and planning, and to everyone who attends.... I know Ed would wish you a safe ride and a beer held high!
8:20 PM Thursday, March 10, 2011
Hi all. Just a quick update on Ed - he felt great when he woke up today. We both had a good night's sleep and we woke up around 5:30 (our normal time) and he had good color in his face and more energy than the day before. He took a shower and got dressed in regular clothes for the 2nd time in 24 days. While I was at the office and running errands, Lou took Ed for a drive to look at his hot-rod in Camarillo at the shop where it's being built and then they went to Rocket Fizz to look for some hard candy. He totally enjoyed being outside in the beautiful sunshine and we had an excellent afternoon. Very excellent.
Lisa, the home health care nurse, just left and she was able to get some of the medications switched back to IV infusion after seeing that the sublingual versions weren't working that well. She's truly a caregiver in every sense of the word and an excellent teacher as well. The pharmacy delivered the new meds late this afternoon and Lisa has deemed me competent in connecting and changing out Ed's TPN and giving the IV infusions for the round-the-clock meds that keep him comfortable. What a small world - Lisa and her boyfriend are in the same motorcycle club that Ed rode with a little about 12 years ago. They know several people in common. Thank goodness for nurturing people like Lisa.
Tonight, Lou and I are having a glass of wine and we're pondering a movie. Ed thought he's like to watch "Due Date" (from the makers of "Hangover"), but he's not feeling so great right now - Lisa says he will probably be exhausted after going out today, but that's usually what happens and to just keep him quiet and resting tonight and tomorrow with no plans to go out. I'm glad the weather was warm and beautiful today - he really did enjoy getting out of the house, and he didn't even mind wearing the mask.
Thanks for the great comments - I promise you I read them to Ed and he loves to hear them. It's fun to see how the blog is being viewed and forwarded to so many friends from so many different arenas of Ed's life - he certainly has touched a lot of people!
Well, that's the Thursday update. I'll be back tomorrow. Good night!
Lisa, the home health care nurse, just left and she was able to get some of the medications switched back to IV infusion after seeing that the sublingual versions weren't working that well. She's truly a caregiver in every sense of the word and an excellent teacher as well. The pharmacy delivered the new meds late this afternoon and Lisa has deemed me competent in connecting and changing out Ed's TPN and giving the IV infusions for the round-the-clock meds that keep him comfortable. What a small world - Lisa and her boyfriend are in the same motorcycle club that Ed rode with a little about 12 years ago. They know several people in common. Thank goodness for nurturing people like Lisa.
Tonight, Lou and I are having a glass of wine and we're pondering a movie. Ed thought he's like to watch "Due Date" (from the makers of "Hangover"), but he's not feeling so great right now - Lisa says he will probably be exhausted after going out today, but that's usually what happens and to just keep him quiet and resting tonight and tomorrow with no plans to go out. I'm glad the weather was warm and beautiful today - he really did enjoy getting out of the house, and he didn't even mind wearing the mask.
Thanks for the great comments - I promise you I read them to Ed and he loves to hear them. It's fun to see how the blog is being viewed and forwarded to so many friends from so many different arenas of Ed's life - he certainly has touched a lot of people!
Well, that's the Thursday update. I'll be back tomorrow. Good night!
Wednesday, March 9, 2011
Wednesday, March 9th, 2011 9:50 PM
Just getting ready to turn in - feels good to actually have a routine with a normal schedule again. It did feel great to sleep in a regular bed last night and Lou's home is so lovely and peaceful. Ed mostly rested in the recliner and dozed and watched a little TV. We hooked up a DVD player and got a half dozen movies at Blockbuster tonight - if any of you haven't seen "Despicable Me" - the animated cartoon - it's pretty cute. We finally got all the meds from the pharmacy tonight - they had to order some - and I'm hoping that means Ed will feel even better tomorrow. The transition from IV meds to sublingual and patches wasn't easy, but hopefully day 2 will bring more level relief.
Several more cards came in the mail today - so great - it really makes him smile to hear the blog comments and read the cards. I'm hoping tomorrow he will feel like venturing outdoors to the patio to have a little time in the fresh air. The flowers blooming outside are beautiful and will lift his spirits for sure. The TPN is only running about 16 hours a day, so he has 8 hours of freedom when he's not hooked up to anything. I'm going to do my best to get him outside during his IV-free time the next couple of days, even if it's just for a few minutes.
Thanks for your blog hugs and well wishes.... I'll be back tomorrow with more on Ed. Hope you all sleep well.
Several more cards came in the mail today - so great - it really makes him smile to hear the blog comments and read the cards. I'm hoping tomorrow he will feel like venturing outdoors to the patio to have a little time in the fresh air. The flowers blooming outside are beautiful and will lift his spirits for sure. The TPN is only running about 16 hours a day, so he has 8 hours of freedom when he's not hooked up to anything. I'm going to do my best to get him outside during his IV-free time the next couple of days, even if it's just for a few minutes.
Thanks for your blog hugs and well wishes.... I'll be back tomorrow with more on Ed. Hope you all sleep well.
Wednesday, March 9, 2011 11:00 AM
Just enjoying a sunny morning hee at Lou's with Ed dozing in the lounge chair and Sesame Street on TV. He does love his cartoons and Sponge Bob Square Pants doesn't come on until later! Did not go to the office today - enjoyed sleeping together in a normal sized bed for the first time in over 3 weeks, so we decided it was my morning off. Enjoyed coffee with Lou and reading the paper and relaxing a little. It's so peaceful here - no noisy equipment and buzzers and IV's beeping and blood pressure machines and people coming in and out every 20 minutes. The home care nurse is compressing the TPN so Ed can be disconnected for a few hours each day which will be wonderful. They have his set up in a backpack with a battery pump, so he's much more mobile than with a rolling IV stand - they don't work too well on carpeting and they bang up the baseboards. The pharmacy delivers the bags of "juice" and I inject it with vitamins and hook him up. It's pretty simple. Lisa, the nurse, has been working with Dr. Menco for quite some time and she's a wonderful teacher. Tonight she will come and watch me do what she showed me last night, and if I "pass the test" she will only need to come over if we need her. Looks like I'll get some use out of that nurses's costume after all.
Ed's beard starting coming out today, so he is clean shaven from the neck up - I told Lou to hide the shaver while I go run errands - I've always been a big fan of chest hair and I'm not sure what he'll do if he gets bored while I'm gone!
I hear there is a ride planned for Sunday and I know many of you will be attending. I've only heard a few details, but I'm sure it will be wonderful. I know you'd all enjoy coming by, but thanks for respecting the logistics that prevent that. Ed is insisting on having peace and quiet and not wanting to see anyone, and he means it right now. He is very sensitive to noises and smells and anything that interrupts his ability to doze and rest, so thanks for understanding. Photos will be fabulous and please raise a toast and know he looks forward to being back in the pack when he's feeling better and has this behind him. Ride safe and when you feel the warmth of the sun and the coolness of the wind on your face, send those thoughts his way. It's what he loves. Have a beer and some pepperoni pizza for him too!
Talk to you later this evening.
Ed's beard starting coming out today, so he is clean shaven from the neck up - I told Lou to hide the shaver while I go run errands - I've always been a big fan of chest hair and I'm not sure what he'll do if he gets bored while I'm gone!
I hear there is a ride planned for Sunday and I know many of you will be attending. I've only heard a few details, but I'm sure it will be wonderful. I know you'd all enjoy coming by, but thanks for respecting the logistics that prevent that. Ed is insisting on having peace and quiet and not wanting to see anyone, and he means it right now. He is very sensitive to noises and smells and anything that interrupts his ability to doze and rest, so thanks for understanding. Photos will be fabulous and please raise a toast and know he looks forward to being back in the pack when he's feeling better and has this behind him. Ride safe and when you feel the warmth of the sun and the coolness of the wind on your face, send those thoughts his way. It's what he loves. Have a beer and some pepperoni pizza for him too!
Talk to you later this evening.
Tuesday, March 8, 2011
11:30 PM Tuesday, March 8, 2011
Hi everyone. Thanks for your patience today - it was a long day of getting home, but we're settled now and Ed is sleeping peacefully at his Mom's house -- just like when he was little. We had lots of stuff going on today. We leflt the hospital about 4:30 after the nurse removed Ed's PICC line and accessed the check port they put in a week and a half ago. It will be nice for him not to have tubes dangling from his bicep. On our way home, Ed insisted on one minor detour - we stopped by the hot rod shop where his car is being worked on and he got to listen to the sound of the motor - IT'S REALLY LOUD! The car looks amazing and Ed is itching to get behind the wheel. Shouldn't be long now. We also stopped by the house for a minute (literally) and we checked out the progress on the bathroom - the tile looks amazing and we're excited for the unveiling. The home health care nurse came by and got the TPN hooked up and going - it's actually quite amazing how easy and convenient it is. We had a couple of snaffus with getting the meds transitioned and prescriptions filled, but it all worked out in the end and we're finally settled in. As expected, the chemo caused Ed's hair to start falling out, so today he asked me to shave his head - he looks pretty cute - very "Kojak" (for sure I'm dating myself there....) He's not feeling great - very exhausted - and still not able to have visitors until we get through the next chemo round. We go back to the oncologist Monday morning, and if everything is on track, he'll be re-admitted to Los Robles and we'll start the chemo again on Tuesday the 15th. He'll be there for 3 or 4 days and then hopefully we'll be able to come home again right away. Ed really needs to rest and stay on track this next few days and we appreciate your understanding that - everything we're doing is to make sure he has the very best possible chance of getting through this as comfortably and quickly as possible. As much as we'd like to have things be different, we are following strict instructions to the letter. Down the road we are planning to have lots of time to celebrate and get back to our social butterfly lives.
I'm signing off now and I will update sometime tomorrow.
I'm signing off now and I will update sometime tomorrow.
Monday, March 7, 2011
11:30 PM Monday, March 7, 2011
Well, the wait finally paid off. Ed's white count came WAY up today - 6500 - and the doctor said he can come home hopefully tomorrow (predicated on having all the home-care arrangments in place to get him set up for the TPN and medication transitions, etc). I was busy this evening getting quite a bit of the stuff at the hospital packed - it's amazing how much stuff accumulates in 3 weeks! They will probably take out his PICC line tomorrow and access the port in his chest for the meds from this point forward and that will be much easier to manage and Ed won't have IV lines hanging out of his upper arm, which have to be bandaged to shower, etc. Anything they can do to make life more normal is better for him and will make it easier to manage day to day. That means almost a week break before going back on the 15th. I'm hoping the weather will cooperate and we'll have lots of sunny days that he can relax on the patio in the fresh air. I'll let you know when he's settled and whether he'll be able and ready for company. We'll be at his Mom's house in Camarillo. He still has to be very careful about not catching any colds or bugs, and he's pretty exhausted, but I'm sure he'll be feeling much better after he's home for a day or two and the multitude of nighttime interruptions stop. Having 6 or 8 hours of sleep in a row does wonders!
I'll check in tomorrow and let you know how everything works out for getting settled at Lou's house.
I'll check in tomorrow and let you know how everything works out for getting settled at Lou's house.
Sunday March 6, 2011 Almost Midnight...
Just finished watching Cupcake Wars on TV while I baked cupcakes for Ida's birthday tomorrow - very inspiring and relaxing. (I used a mix.....!) Ed is hopefully sleeping peacefully (he was when I left an hour ago). He was pretty tired at the end of the day. The blood transfusion went well - no issues or surprises - neither of us had ever seen it done before and it is a little strange to see a bag of blood hanging there and seeing the tube running into your IV, but it's a good thing for him. We left the light on and Ed said he could call any one of a number of his buddies if he felt a bite on his neck and he needed a silver bullet really quick! I knew that Coors would actually come in handy at some point......
Thank you bunches to Leo and Georgette for a delicious home-cooked meal delivered to the hospital tonight - Ed is really sensitive to food smells right now, so L, G & I dined in the lobby and all that was missing were candles - they thought of everything! Yummy salad, bread, beef stroganoff and cookies. There is nothing like a home-cooked meal after so much cafeteria and fast food!
Ed has a big week ahead so we're both hoping to get some shut-eye tonight. Hopefully all the arrangements will be made in the next day or two for Ed to leave the hospital and have a few days break before he has to go back on the 15th for the next chemo session. On Monday we are meeting with the man who will be performing our wedding ceremony - he and I are hoping to get to the courthouse in Ventura tomorrow to apply for the license (he has to appear for Ed) and then we can set a time. He is a Harley-riding ordained minister - we thought that would be a nice connection and we're looking forward to meeting with him. My cousin Cheri found him for us - she's worked with him as a consultant for the spiritual ministry where she works in Agoura. (I bet a few of you were wondering if we had snuck off to Vegas....... not sure "snuck" is a word, but it works here.... no, we didn't.)
The bathroom is looking great but still has a week or so before it's finished, so when Ed goes home this week, we will probably be going to stay at his Mom's house. She has a great place, perfect for what he needs, and it will also keep some of the temptation for visitors at bay, since she lives in Camarillo. We're still being extremely careful, wearing masks, etc. and limiting visitors to the kids only. I know it is frustrating, but we appreciate your understanding and patience. This is certainly a lesson in patience and surrender for us too, but before we know it, we'll be in a rhythm and routine that will include some socializing again. Stay tuned.....you're all on Ed's dance card!
Time to frost the cupcakes, so I'll be back in touch later on Monday.
Thank you bunches to Leo and Georgette for a delicious home-cooked meal delivered to the hospital tonight - Ed is really sensitive to food smells right now, so L, G & I dined in the lobby and all that was missing were candles - they thought of everything! Yummy salad, bread, beef stroganoff and cookies. There is nothing like a home-cooked meal after so much cafeteria and fast food!
Ed has a big week ahead so we're both hoping to get some shut-eye tonight. Hopefully all the arrangements will be made in the next day or two for Ed to leave the hospital and have a few days break before he has to go back on the 15th for the next chemo session. On Monday we are meeting with the man who will be performing our wedding ceremony - he and I are hoping to get to the courthouse in Ventura tomorrow to apply for the license (he has to appear for Ed) and then we can set a time. He is a Harley-riding ordained minister - we thought that would be a nice connection and we're looking forward to meeting with him. My cousin Cheri found him for us - she's worked with him as a consultant for the spiritual ministry where she works in Agoura. (I bet a few of you were wondering if we had snuck off to Vegas....... not sure "snuck" is a word, but it works here.... no, we didn't.)
The bathroom is looking great but still has a week or so before it's finished, so when Ed goes home this week, we will probably be going to stay at his Mom's house. She has a great place, perfect for what he needs, and it will also keep some of the temptation for visitors at bay, since she lives in Camarillo. We're still being extremely careful, wearing masks, etc. and limiting visitors to the kids only. I know it is frustrating, but we appreciate your understanding and patience. This is certainly a lesson in patience and surrender for us too, but before we know it, we'll be in a rhythm and routine that will include some socializing again. Stay tuned.....you're all on Ed's dance card!
Time to frost the cupcakes, so I'll be back in touch later on Monday.
Sunday, March 6, 2011
Sunday, March 6, 2011 11:45 AM
Good morning! Happy Sunday.....hope you all have something planned for some rest and time with family and friends. We're still here at Los Robles - we're planning to watch a couple of movies today and then I have a few errands to run. Tomorrow is Ida's birthday so we'll have a little celebration at the shop in the morning.
The on-call oncologist was just here and he said Ed's white count is moving in the right direction - it's gone up - a good sign that the nupagen is working - yeah! His blood protein is down a bit from when we got here 3 weeks ago, so they've adjusted the calories he's getting in his TPN, which should take care of that. They are determined to fatten him up! Red cell count is down a little so they will give him a blood transfusion today, which is very typical and done frequently during chemo - nothing to worry about. I asked about donations since some of you have asked me and here's what the doctor and nurse told me - the hospital encourages people to donate blood, but it wouldn't be for Ed specifically - there is an extensive screening process, etc. that takes time and they don't normally designate blood donations specifically for someone unless you are donationg your own blood in anticipation of a surgery or it's a very rare type or something. They do really appreciate donations to keep the general supply up. Feel free to donate with Ed in your thoughts - it would be a win/win for everyone. Thank you for all for your offers of blood and food and help in general. It's been an overwhelming and amazing outpouring. We feel blessed to have so many friends and family with such open hearts. An amazing blessing!!
Thanks again for your blog comments - I know some of you are still having trouble posting comments - I recommend asking a teenage for help if you have one available - they seem to be born with that type of knowledge now days. More cards arrived yesterday - Ed really really loves getting mail, so that's an option too. Since we're hoping he may be able to come this next week - send any cards to the house so he'll definately get them. I have them stacked up on the windowsill in the hospital room since we've had to remove all the flowers and plants while his white count was low. I'll ask the doctor tomorrow if he's allowed to have visitors again and then let you all know if he's feeling up to it as well.
I will check in a little later and let you know how the transfusion went. I'm sure it will be just fine, but I know everyone is anxious for updates. We have a wonderful nurse - Kathy - today and she is so on top of everything - it's amazing. They are all good, but she's super excellent and attentive. She says it's only cause she's hoping for an invite to the lake house!
Later all. Enjoy your Sunday.
The on-call oncologist was just here and he said Ed's white count is moving in the right direction - it's gone up - a good sign that the nupagen is working - yeah! His blood protein is down a bit from when we got here 3 weeks ago, so they've adjusted the calories he's getting in his TPN, which should take care of that. They are determined to fatten him up! Red cell count is down a little so they will give him a blood transfusion today, which is very typical and done frequently during chemo - nothing to worry about. I asked about donations since some of you have asked me and here's what the doctor and nurse told me - the hospital encourages people to donate blood, but it wouldn't be for Ed specifically - there is an extensive screening process, etc. that takes time and they don't normally designate blood donations specifically for someone unless you are donationg your own blood in anticipation of a surgery or it's a very rare type or something. They do really appreciate donations to keep the general supply up. Feel free to donate with Ed in your thoughts - it would be a win/win for everyone. Thank you for all for your offers of blood and food and help in general. It's been an overwhelming and amazing outpouring. We feel blessed to have so many friends and family with such open hearts. An amazing blessing!!
Thanks again for your blog comments - I know some of you are still having trouble posting comments - I recommend asking a teenage for help if you have one available - they seem to be born with that type of knowledge now days. More cards arrived yesterday - Ed really really loves getting mail, so that's an option too. Since we're hoping he may be able to come this next week - send any cards to the house so he'll definately get them. I have them stacked up on the windowsill in the hospital room since we've had to remove all the flowers and plants while his white count was low. I'll ask the doctor tomorrow if he's allowed to have visitors again and then let you all know if he's feeling up to it as well.
I will check in a little later and let you know how the transfusion went. I'm sure it will be just fine, but I know everyone is anxious for updates. We have a wonderful nurse - Kathy - today and she is so on top of everything - it's amazing. They are all good, but she's super excellent and attentive. She says it's only cause she's hoping for an invite to the lake house!
Later all. Enjoy your Sunday.
Saturday, March 5, 2011
Saturday March 5, 2011 8:00 AM
i apologize for not posting yesterday - worked at the office all day to get the week caught up and the day went very long. Ed is doing better- white cell count is up slightly to just about 1,000 - Dr. Menco says we'll really know the nupagen is working when it shoots uip several thousand points in one day - and it could take another few days. His fever has hovered right around 100, so good news that it hasn't spiked higher, but he's still pretty much quarantined until that cell count goes up really significantly. Dr. Johnson has been wonderful - working hard each day to balance the meds just right to keep the pain, nausea, and vomiting at bay - we've got that pretty well covered. The diarreah we're still working on, but progress is being made. They are thinking about possibly talking about coming home early to mid week. That way Ed will have a few days at home before the next round of chemo on the 15th. I'll let you know for sure.
Lots of cards this week......Ed really enjoys opening them and reading them every day. I'l take the laptop and get him caught up on the blog this morning - getting ready to head up there after I take a quick shower.
Enjoy the beautiful sunny day. Pause for a moment to close your eyes and soak up the warm sun on your face. Pass those thoughts to Ed. He would love nothing more than to feel that as well. Thank you! Liz
Lots of cards this week......Ed really enjoys opening them and reading them every day. I'l take the laptop and get him caught up on the blog this morning - getting ready to head up there after I take a quick shower.
Enjoy the beautiful sunny day. Pause for a moment to close your eyes and soak up the warm sun on your face. Pass those thoughts to Ed. He would love nothing more than to feel that as well. Thank you! Liz
Thursday, March 3, 2011
Thursday March 3, 2011 10:15 PM
Ed is dozing and I'm just getting payroll ready for tomorrow and some paperwork finished. Thanks for the comments......I will read the new ones to Ed tomorrow - he was pretty tired today ---- in fact, he slept through Bill O'Reilly ---- another crack in the universe he says! I had gone home to check on things, pick up the mail and throw some laundry in - hadn't been home in 3 days. I called him at 5 to remind him to tune in, but he didn't answer so I figured it was just my "shush time". I got back up to the hospital about 7 and we watched the re-run of Bill that comes on FOX at 8 PM. A day without The Factor is like a day without sunshine to Ed.
His fever is still low grade - hovering around 99.9 to 100.5 for the past couple of days, but nothing higher, so that's a good thing. White count is still down around 600. Dr. Menco and Dr. Johnson both agree that early next week will be the soonest we can talk about going home. They don't want to try right before a weekend in case Ed needs something - they both want to be available and that's easier to facilitate during the week. We did walk 2 laps around the nurses station tonight. Ed was pretty tired when we finished. Dr. Johnson changed a couple of meds today and has put in orders to end the countless interruptions during the night - he is allowing the blood sugar finger pricks and checking of vital signs and blood pressue to be suspended for a 6 hour period at night so we can try and get some rest. The meds (some of which are every 3 hours) still have to continue and so does the TPN, but those things are quick and really don't even require him to wake up or move or flip the lights on bright - they just push them into the IV and it's done. Hopefully we'll get a little more sleep tonight - I'll let you know! We're certainly looking forward to some peaceful nights at home very soon! As wonderful and caring as everyone is here --- this is definitely NOT the Los Robles Spa!
Good night all!
His fever is still low grade - hovering around 99.9 to 100.5 for the past couple of days, but nothing higher, so that's a good thing. White count is still down around 600. Dr. Menco and Dr. Johnson both agree that early next week will be the soonest we can talk about going home. They don't want to try right before a weekend in case Ed needs something - they both want to be available and that's easier to facilitate during the week. We did walk 2 laps around the nurses station tonight. Ed was pretty tired when we finished. Dr. Johnson changed a couple of meds today and has put in orders to end the countless interruptions during the night - he is allowing the blood sugar finger pricks and checking of vital signs and blood pressue to be suspended for a 6 hour period at night so we can try and get some rest. The meds (some of which are every 3 hours) still have to continue and so does the TPN, but those things are quick and really don't even require him to wake up or move or flip the lights on bright - they just push them into the IV and it's done. Hopefully we'll get a little more sleep tonight - I'll let you know! We're certainly looking forward to some peaceful nights at home very soon! As wonderful and caring as everyone is here --- this is definitely NOT the Los Robles Spa!
Good night all!
Thursday, March 3, 2011 3:15 PM
Sorry for the delay in the post today - lots to do at the office this morning and Dr. Menco didn't come in until about 2:00 and then we had some other hospital personnel come in with business to do. So here we are today - things are about the same. Ed's white cell has come up slightly, which is good, but Dr. Menco says it hasn't quite kicked in yet, so we're still being super cautious with contamination and germs, Ed's not leaving the room yet and no visitors still. Ed started feeling like he might want to try eating something soon - took a couple of sips of tea and ate a corner of a saltine cracker today. We'll see how he does with that before we try more. He just hasn't been feeling so great today. The social worker came in today and chatted with us and she was very helpful. Dr. Johnson (gastro doctor) is on his way in, so I'll close for now and update later this evening.
Wednesday, March 2, 2011
Wednesday March 2, 2011 5:45 PM
Well, I've got 15 minutes left of the sacred shushing hour of Bill O'Reilly to get a post finished. The long and short of it today is that Ed's white count dropped below 500 today and he is running a slight fever which they are watching very closely. That means that unfortunately, the doctor has imposed a ban on ALL visitors, even the kids, just until his white count comes up and the fever goes away - hopefully no more than a day or two. Ed says to say he's sorry about that and hopes no one takes it personally......we just have to put 100% into making sure we do the right thing for the long term. He wasn't feeling so hot today anyway - somewhat of an increase in the abdominal pain and a little of the nausea and diarrhea coming back, so we've been really taking it easy - no walks today and just a very short shower for him. The doctors are also working on getting his nighttime sleep situation to a better place since he still has trouble staying asleep for any period of time and he needs more concentrated rest. Everything else is just status quo here at Los Robles Hospital. 18 days and counting.....
We see that it's raining here in Thousand Oaks and the wind is whipping around pretty good. No sunset tonight - the sky is pretty gray. We're going to snuggle up and watch a movie and call it an early night. For those of you who have ever partied with Ed, that crack in the universe is the sound of Ed going to bed before 3 AM......! Hold onto your hats.....Ed says the universe may temporarily come off of it's axis...... He also says thanks to all of you who are keeping a few silver bullets on ice for him and he also says not to drink them - he's planning to toast one with each of you soon! Until tomorrow.......
We see that it's raining here in Thousand Oaks and the wind is whipping around pretty good. No sunset tonight - the sky is pretty gray. We're going to snuggle up and watch a movie and call it an early night. For those of you who have ever partied with Ed, that crack in the universe is the sound of Ed going to bed before 3 AM......! Hold onto your hats.....Ed says the universe may temporarily come off of it's axis...... He also says thanks to all of you who are keeping a few silver bullets on ice for him and he also says not to drink them - he's planning to toast one with each of you soon! Until tomorrow.......
Wednesday March 2, 2011 11:15 AM
Good morning. Just a quick update. Ed had not quite as restful a night as the previous couple - he is having a little more abdominal cramping and such. I'm at the office right now (pretty much my routine now to be here at the shop from 6:30 to 11:30 AM) but getting ready to head to the hospital as I do each day before lunch to make sure I catch the doctors who come round on their lunch hours. I need to get to the hospital by 11:45 AM to get a parking space before all the lunchtime visitors fill the garage or I have to valet and then retreive my car by 6 PM and move it. Didn't get downstairs last night to do that and I had to find the hospital security guard at 6 AM this morning to locate my car in the basement valet area and track down my car keys in the ER. I'll try not to do THAT again! After the doctors come in, I'll update the blog this afternoon, hopefully with good news about his white count. He'll still be in the hospital for a few days yet it seems until we figure out the home care details and meds. I haven't been home in 3 days, so I'm planning to stop by the house and catch the progress on the bathroom remodel later today.
I'll be back on the blog late this afternoon - probably during Bill O'Reilly......:)
I'll be back on the blog late this afternoon - probably during Bill O'Reilly......:)
Tuesday, March 1, 2011
Tuesday March 1, 2011 4:45 PM
This will be a quick post- not much new to report - Ed is much more comfortable and resting and dozing pretty much a lot of the day. This afternoon, we took a brief walk to just outside the front doors of the hospital - he was anxious to get a breath of fresh air and feel the sun on his face. He was pretty tired when we got back upstairs.
Ed's white count has plummeted in response to the chemo - expected - from 12 on Sunday to just barely over 1 today. The nupagen shots will help kick his white cell production "factory" into overdrive hopefully in the next few days - in the meantime Dr. Menco has imposed a "mask" rule and asked us to curtail any non-essential visitors until his count is up. Ed has to wear a mask and so does anyone who comes in the room pretty much including the extraneous hospital staff like cafeteria people and cleaning crew, etc. Doc says I don't need a mask because he says Ed and I already share the same germs, but no more hugging anyone else for a while either. It's just a precaution - we don't need him getting any type of infection or cold or anything right now. Lots of hand washing and anti-bacterial foam going on here and he's just gonna have to settle for getting bored with me for a few days.
Ed is sleeping now so I'm going to try and get a little bit of office work done and update my spreadsheets with the medical insurance stuff and his lab test results, etc. that I try to keep up with every day. We're happy he's resting comfortably and able to sleep - he has some catching up to do!
Ed's white count has plummeted in response to the chemo - expected - from 12 on Sunday to just barely over 1 today. The nupagen shots will help kick his white cell production "factory" into overdrive hopefully in the next few days - in the meantime Dr. Menco has imposed a "mask" rule and asked us to curtail any non-essential visitors until his count is up. Ed has to wear a mask and so does anyone who comes in the room pretty much including the extraneous hospital staff like cafeteria people and cleaning crew, etc. Doc says I don't need a mask because he says Ed and I already share the same germs, but no more hugging anyone else for a while either. It's just a precaution - we don't need him getting any type of infection or cold or anything right now. Lots of hand washing and anti-bacterial foam going on here and he's just gonna have to settle for getting bored with me for a few days.
Ed is sleeping now so I'm going to try and get a little bit of office work done and update my spreadsheets with the medical insurance stuff and his lab test results, etc. that I try to keep up with every day. We're happy he's resting comfortably and able to sleep - he has some catching up to do!
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