Wow, yesterday went by too quickly to get to the blog. I apologize - I know lots of you log on each day and look forward to updates.
We went to UCLA in the morning and had a consultation with Dr. De Vos. He was the in-service doctor who monitored Ed's ARA-C chemo treatment at UCLA in March and he's also involved with the stem cell transplant program at UCLA. He had good news after reviewing Ed's records from Dr. Menco - the chemo regiman is showing good results with "melting" the lymphoma. He says it's really important to stay on the aggressive schedule to hold onto the progress made so far, so he will make sure a dose of ARA-C is available for Ed this week at UCLA since it's still on national backorder and very few facilities have any at the moment. As soon as a bed is available they will call us to come in, most likely Monday or Tuesday of this next week. It will be a 3-4 day stay again and Dr. De Vos happens to be on his in-service rotation and will be the supervising doctor for Ed during the chemo.
He also briefly explained the stem cell transplant procedure and will present Ed's case to the stem cell committee at their meeting this next Monday to start the ball rolling for the process. We will be assigned a case manager/coordinator who will go through the extensive paperwork, insurance navigation, logistics, and give us a tour of the facility and explain the procedure in detail. It will likely be scheduled for shortly after Ed completes his 6th chemo sometime in mid-June and involves about a 30-day hospital stay. Dr. De Vos shared encouraging research statistics and was pleased with the progress of Ed's digestive tract getting back to functioning. Ed has actually put on a few pounds and it's making a huge difference in how he feels - more strength and not so tired all the time. Dr. De Vos told him to eat all the foods everyone else has to stay away from - pizza & ice cream, which are two of Ed's favorites anyway. Everyone will be jealous of his diet for sure. He's going to stay on the TPN for now as well until he's got a really stable eating pattern down and has some good weight gain, but Ed is enjoying eating again for sure.
Ed' been up and around this weekend and has his eye on going to a car show in Camarillo tomorrow - then he'll settle down for the chemo and some forced quiet time for about 10 days or so. Meanwhile, it's gorgeous weather and he's happy to be out in it!
We're going to a birthday party tonight where he'll be able to see lots of friends so that will be a good time.
Back tomorrow.......
Saturday, April 30, 2011
Friday, April 29, 2011
7 AM Friday, April 29, 2011
Had a quick but great trip to the lake - arrived about 6 PM Wednesday. Driving in at dusk is gorgeous - the sun setting over all the vineyards and the deer out to graze - saw more than a dozen families of them in the tall fields. The vineyards are so green and gorgeous after the heavy rains this spring, so everything is just picturesque. Ed drove the entire trip up so he was pretty wiped out when we arrived, but we had pizza and apple pie and ice cream, then he took a nap on the couch. Got up to a beautiful morning with deer in the yard right outside the bedroom sliding doors, lots of soaring birds, assorted small critters and sunshine. We left around noon and headed to Bakersfield so Ed could look at yet another 4-wheel toy and it was a long drive home, but we made it just fine. His skinny little butt got sore sitting so long, but pillows came to the rescue and made it easier. Ed really enjoyed getting away and managed to squeeze a lot into the short trip. Can't wait to go back up to the lake soon!
We're off to UCLA this morning to meet the stem cell transplant doctor, so we're hoping to get some definitive information from that appointment, as well as nail down the next chemo arrangements. I'll update this afternoon or evening with details.
We're off to UCLA this morning to meet the stem cell transplant doctor, so we're hoping to get some definitive information from that appointment, as well as nail down the next chemo arrangements. I'll update this afternoon or evening with details.
Tuesday, April 26, 2011
8 PM Tuesday April 26, 2011
Just a quick update as I'm trying to get out of the office to go home. Ed had the testicular ultrasound today, but no results yet. I think it has been his favorite procedure at Los Robles to date. :)
We had a quick lunch with Tyler and Kristin at Islands and then Tyler took Ed to check on the progress of his hot rod. He did a little work at the office and then watched the Factor and drove his own car home! First time driving since February 13th I believe (I don't check the mileage on the cars when I leave him home alone briefly, but I will probably have to start). So far, no calls from the CHP so that's a good thing.
Lisa will be by in the morning to draw blood - I'll pass along the pole dancing suggestions and let you know whether it's allowed by Aetna under our "home health care" coverage or if Lisa wants to perform strictly under a "community service" or "good samiritan" type of arrangement and take a standard mileage deduction on her income tax....... of course there ARE those under-reported "tips" that so often accompany these types of philanthropic gestures.........
We are still planning to make a quick trip to the lake tomorrow, returning on Thursday. If I take the laptop and get wireless service at the lake, I'll update the blog. If by chance there isn't anything posted, I'll surely get to it after our morning appointment at UCLA on Friday. Should have quite a bit of info to post by then, so stay tuned.
We had a quick lunch with Tyler and Kristin at Islands and then Tyler took Ed to check on the progress of his hot rod. He did a little work at the office and then watched the Factor and drove his own car home! First time driving since February 13th I believe (I don't check the mileage on the cars when I leave him home alone briefly, but I will probably have to start). So far, no calls from the CHP so that's a good thing.
Lisa will be by in the morning to draw blood - I'll pass along the pole dancing suggestions and let you know whether it's allowed by Aetna under our "home health care" coverage or if Lisa wants to perform strictly under a "community service" or "good samiritan" type of arrangement and take a standard mileage deduction on her income tax....... of course there ARE those under-reported "tips" that so often accompany these types of philanthropic gestures.........
We are still planning to make a quick trip to the lake tomorrow, returning on Thursday. If I take the laptop and get wireless service at the lake, I'll update the blog. If by chance there isn't anything posted, I'll surely get to it after our morning appointment at UCLA on Friday. Should have quite a bit of info to post by then, so stay tuned.
8:00 AM Tuesday April 26, 2011
Ed's home1 I picked him up yesterday afternoon and he had a doctor appointment with a new urologist for the testicular infection situation. Have an ultrasound scheduled at Los Robles Hospital this morning, then we should be clear for the week until our UCLA appointment on Friday.
Pepperoni pizza was on last night's menu and he ate 2 pieces (usually it's 7 or 8, but hey, it's a good start). He also ate salad - yeah - Birkenstocks can't be far behind. :)
Our nurse Lisa came by last night and taught me all the new procedures for the IV antibiotics - pretty simple but the pole keeps him a little tied down for 60-75 minutes 3 times a day. I told him he's just going to have draw on his memory file to imagine there's someone ON the pole that will make the sitting still more bearable! Lisa told us that she and her husband are in this month's issue of BIKER magazine, so we'll be looking for that. She's the perfect nurse for Ed - amazingly smart AND loves motorcycles - truly a great fit. She'll be back o draw blood on Wednesday morning and then we're planning to take off for the lake for an ovenight trip.
The weather is gorgeous so we're looking forward to the week. Have a great day!
Pepperoni pizza was on last night's menu and he ate 2 pieces (usually it's 7 or 8, but hey, it's a good start). He also ate salad - yeah - Birkenstocks can't be far behind. :)
Our nurse Lisa came by last night and taught me all the new procedures for the IV antibiotics - pretty simple but the pole keeps him a little tied down for 60-75 minutes 3 times a day. I told him he's just going to have draw on his memory file to imagine there's someone ON the pole that will make the sitting still more bearable! Lisa told us that she and her husband are in this month's issue of BIKER magazine, so we'll be looking for that. She's the perfect nurse for Ed - amazingly smart AND loves motorcycles - truly a great fit. She'll be back o draw blood on Wednesday morning and then we're planning to take off for the lake for an ovenight trip.
The weather is gorgeous so we're looking forward to the week. Have a great day!
Monday, April 25, 2011
6:30 AM Monday April 25, 2011
Happy Monday! It was a good weekend although it would have been better if Ed was home, but we think today is the day that he'll be "paroled" as he likes to put it.
Easter was a nice day - Tyler and I took Ed breakfast and an Easter basket with all the appropriate stuff - marshmallow eggs, peeps, jelly beans, a box of See's candy and a coloring book - I told him he has full permission to color OUTSIDE the lines (as we all know he metaphorically does all the time). All the kids came by, along with Cheryl, Lou, Joe and Joel, and then Kevin later in the evening. So Ed had lots of company and entertainment - no time for conducting any of those silly medical experiments! Thanks for the delicious food Cheryl. Ed at a good amount of mashed potatoes and a whole meatball. Today he'll have the soup. Yummy! You are a great cook!
Ed also had a PICC line put back in yesterday - this time in the right bicep, so he's free of the other IVs and much more comfortable. His poor veins were starting to get really irritated in his arms, so it will be great to give them a break, as well as give him a break from all the poking and prodding.
Waiting for Dr. Mazur and Dr. Menco to come by today and hopefully they will decide to let Ed go home. The weather has gotten beautiful this morning, just in time for us to get in a quick trip to the lake house before we go to UCLA on Friday. That's the plan so far, and I'll let you know if anything changes. Hope you all had a splendid Easter filled with chocolate bunnies and jelly bean dreams. It was so much fun watching all the little ones at my sister's house - kid mayhem as we like to call it. 10 little kids versus 500 easter eggs in the yard -- a lot like Joe vs. The Volcano just with more squeals of delight and chocolate faces!
Have a wonderful day! I'll let you know when Ed is home.
Easter was a nice day - Tyler and I took Ed breakfast and an Easter basket with all the appropriate stuff - marshmallow eggs, peeps, jelly beans, a box of See's candy and a coloring book - I told him he has full permission to color OUTSIDE the lines (as we all know he metaphorically does all the time). All the kids came by, along with Cheryl, Lou, Joe and Joel, and then Kevin later in the evening. So Ed had lots of company and entertainment - no time for conducting any of those silly medical experiments! Thanks for the delicious food Cheryl. Ed at a good amount of mashed potatoes and a whole meatball. Today he'll have the soup. Yummy! You are a great cook!
Ed also had a PICC line put back in yesterday - this time in the right bicep, so he's free of the other IVs and much more comfortable. His poor veins were starting to get really irritated in his arms, so it will be great to give them a break, as well as give him a break from all the poking and prodding.
Waiting for Dr. Mazur and Dr. Menco to come by today and hopefully they will decide to let Ed go home. The weather has gotten beautiful this morning, just in time for us to get in a quick trip to the lake house before we go to UCLA on Friday. That's the plan so far, and I'll let you know if anything changes. Hope you all had a splendid Easter filled with chocolate bunnies and jelly bean dreams. It was so much fun watching all the little ones at my sister's house - kid mayhem as we like to call it. 10 little kids versus 500 easter eggs in the yard -- a lot like Joe vs. The Volcano just with more squeals of delight and chocolate faces!
Have a wonderful day! I'll let you know when Ed is home.
Saturday, April 23, 2011
Saturday 10:30 AM April 23, 2011
It's a quiet Saturday morning.....the sun is trying really hard to break through the haze.
Yesterday started out rough, but by late afternoon, things were better. Ed's pretty frustrated about having to stay longer, but the doctors are being very careful with him after the history of infections, etc. They haven't decided about putting in a PICC line today - we'll wait for Dr. Mazur's partner to come in this afternoon and decide. The blood cultures came back with 2 positive blood infections, but the cultures still haven't narrowed them down exactly, so they are continuing with the 2 broad-spectrum antibiotics for now. The infection in his testicle has also come back so he's a little uncomfortable with that. They hope to have things under control enough to talk about letting him go home Monday or so.
Ed had a very rough time yesterday - he decided to go without any of his "comfort" medications (dilaudid, ativan, zofran) all day (????) as an "experiment". Let's just say that the next time he's so bored that he decides to start conducting medical experiments on himself, I've promised to bring knitting needles and yarn and force to him to learn knitting! By 3 PM, he was literally a basket case and willing to consider the possibility that the medications perhaps MIGHT serve an important purpose. He allowed the nurse to give him the proper doses. He called me an hour later and said "wow, what a difference a "Bin Laden" day can make! When the nurse asked him why he did that, he told her he was conductiong an experiment. She gave him a look that I couldn't duplicate if I tried...... hopefully enough said on that topic!
We have an appointment at UCLA on Friday next week to discuss the stem cell program, so Ed is trying hard to get permission from the doctors to make a quick trip to the lake on Wednesday and come home Thursday. If the infusions are logistically possible, that's what we're trying for. It will be fun to get away even for an overnight trip. Keep your fingers crossed that it happens. his next chemo is scheduled for May 2, so we have a little window. Pray for great weather as well - he deserves a day of sunshine!
I'm getting ready to go up to the hospital (came home after midnight and slept in a little) and I'll let you know later how he's doing. He sounded good on the phone this morning and I'm going to take something yummy for lunch to surprise him. Looking forward to a better day. Later will all about the Easter basket prep - have all the ingredients and I love putting 'em together.
Have a wonderful day. By the way, Ed's white count is up to 3.2 so he can have visitors if you're so inclined. Just call us first cause he may have the minor surgery at some point this weekend to put in a PICC line and he's usually unavailable for several hours when that happens.
Yesterday started out rough, but by late afternoon, things were better. Ed's pretty frustrated about having to stay longer, but the doctors are being very careful with him after the history of infections, etc. They haven't decided about putting in a PICC line today - we'll wait for Dr. Mazur's partner to come in this afternoon and decide. The blood cultures came back with 2 positive blood infections, but the cultures still haven't narrowed them down exactly, so they are continuing with the 2 broad-spectrum antibiotics for now. The infection in his testicle has also come back so he's a little uncomfortable with that. They hope to have things under control enough to talk about letting him go home Monday or so.
Ed had a very rough time yesterday - he decided to go without any of his "comfort" medications (dilaudid, ativan, zofran) all day (????) as an "experiment". Let's just say that the next time he's so bored that he decides to start conducting medical experiments on himself, I've promised to bring knitting needles and yarn and force to him to learn knitting! By 3 PM, he was literally a basket case and willing to consider the possibility that the medications perhaps MIGHT serve an important purpose. He allowed the nurse to give him the proper doses. He called me an hour later and said "wow, what a difference a "Bin Laden" day can make! When the nurse asked him why he did that, he told her he was conductiong an experiment. She gave him a look that I couldn't duplicate if I tried...... hopefully enough said on that topic!
We have an appointment at UCLA on Friday next week to discuss the stem cell program, so Ed is trying hard to get permission from the doctors to make a quick trip to the lake on Wednesday and come home Thursday. If the infusions are logistically possible, that's what we're trying for. It will be fun to get away even for an overnight trip. Keep your fingers crossed that it happens. his next chemo is scheduled for May 2, so we have a little window. Pray for great weather as well - he deserves a day of sunshine!
I'm getting ready to go up to the hospital (came home after midnight and slept in a little) and I'll let you know later how he's doing. He sounded good on the phone this morning and I'm going to take something yummy for lunch to surprise him. Looking forward to a better day. Later will all about the Easter basket prep - have all the ingredients and I love putting 'em together.
Have a wonderful day. By the way, Ed's white count is up to 3.2 so he can have visitors if you're so inclined. Just call us first cause he may have the minor surgery at some point this weekend to put in a PICC line and he's usually unavailable for several hours when that happens.
Friday, April 22, 2011
11:45 PM Thursday April 21, 2011
Just getting ready to go home and go to bed but I thought I'd share a chuckle first.
By the way, Ed did have spaghetti.......I remembered our friends Kent & Fran talking about Gino's Italian restaurant on the boulevard here in town, so I stopped and got take-out spaghetti, lasagna and caprese salad. While I waited at the bar with a glass of wine, I struck up a conversation with a girl who turns out is the daughter of some other friends, John and Gail. We hadn't met before. Small world...... and the food was delicious. Ed really enjoyed the food and it's encouraging to see him eating frequently throughout the day, even if it's just small amounts.
Anyway, back to the story........ when I got back to the hospital tonight, Ed said "I think they aren't giving me all my pain medication (dilaudid)." I was puzzled by this because it's a standing order and he seems pretty comfortable and pain free (sometimes VERY sleepy and pain free) and I see the nurses giving it to him when I'm there. At the hospital, they give it to him in his IV, but at home we have the tablet form that he swallows. I told him I would check on it. When I left to go home, I said good-bye, to which he sleepily replied "When you come back later, bring me some of those Bin Ladens."
I rest my case. He's definately getting his meds!
By the way, Ed did have spaghetti.......I remembered our friends Kent & Fran talking about Gino's Italian restaurant on the boulevard here in town, so I stopped and got take-out spaghetti, lasagna and caprese salad. While I waited at the bar with a glass of wine, I struck up a conversation with a girl who turns out is the daughter of some other friends, John and Gail. We hadn't met before. Small world...... and the food was delicious. Ed really enjoyed the food and it's encouraging to see him eating frequently throughout the day, even if it's just small amounts.
Anyway, back to the story........ when I got back to the hospital tonight, Ed said "I think they aren't giving me all my pain medication (dilaudid)." I was puzzled by this because it's a standing order and he seems pretty comfortable and pain free (sometimes VERY sleepy and pain free) and I see the nurses giving it to him when I'm there. At the hospital, they give it to him in his IV, but at home we have the tablet form that he swallows. I told him I would check on it. When I left to go home, I said good-bye, to which he sleepily replied "When you come back later, bring me some of those Bin Ladens."
I rest my case. He's definately getting his meds!
Thursday, April 21, 2011
3 PM Thursday, April 21, 2011
Just a quick post to update you since both doctors have been in.......Dr. Mazur (infectious disease specialist) got the cultures back today - 2 bacterial infections in his blood, which he says are likely related to the PICC line, which is common with those devices. They pulled the PICC line out today and will use regular IV lines in both arms for the next couple of days to continue round the clock antibiotics (2 different ones) and then use one IV line for PPN (the reduced version of TPN) that is suitable to provide some nutritional support when no central line is available. If they can sufficiently reduce the blood infections by Saturday, they may be able to inplant another PICC line, which he needs to have before he can go home so he can get back on the TPN formula. If all goes extremely well, he may be able to go home by the end of the weekend. His whites are up a little from yesterday - 2.5, and we are happy to see them continuing to climb - Dr. Menco says the Neulasta is gaining ground.
Needless to say, Ed is not a happy camper at the moment being stuck there for at least a couple more days, but it's just required for now. (Dr. Menco said this happens to about 70% of people who receive the aggressive type of chemo that Ed is getting.) Ed is scheduled for his next dose of chemo (the ARA-C) on May 2nd. It's still on back-order as of today, which likely means a 4-day stay in UCLA again if they can allocate some, but we're keeping our fingers crossed that it will become available in the next week so Ed can get his treatment at Los Robles Hospital Dr. Menco gets e-mails everyday with status updates and says that it was available from a European manufacturer, but the FDA quashed it for some reason, so they are still waiting for the stateside manufacturer to catch up with the back orders. He suggested we explore the idea of giving Ed strong antibiotics on a prophylactic basis to try and prevent this infection cycle he's had after each chemo, but it depends on whether Dr. Mazur will agree to it after the next chemo since there are many reasons why its not usually done that way. We'll have that conversation with Dr. Mazur tomorrow when he comes back on his rounds.
He is eating better today - had some chicken noodle soup, crackers and canned pears for lunch. He's going to call me later when he decides what he might want for dinner. He was thinking about his favorite spaghetti from Octavio's in Camarillo.......a bit of a drive, but worth it even if he only eats a few bites! By Sunday, hopefully he'll feel like eating the chocolate-covered marshmallow bunnies he'll find in his basket when he wakes up!
Hope you are all doing well. If you happen to be driving past Los Robles Hospital and notice a knotted rope of bed sheets hanging from a 2nd floor window of the new wing, call my cell phone right away --- it's probably Ed, trying an UN-Houdini like escape. I'm bribing the nurses on the floor with Godiva truffles to keep an eye on him when I'm not there, but they do have other patients!
Needless to say, Ed is not a happy camper at the moment being stuck there for at least a couple more days, but it's just required for now. (Dr. Menco said this happens to about 70% of people who receive the aggressive type of chemo that Ed is getting.) Ed is scheduled for his next dose of chemo (the ARA-C) on May 2nd. It's still on back-order as of today, which likely means a 4-day stay in UCLA again if they can allocate some, but we're keeping our fingers crossed that it will become available in the next week so Ed can get his treatment at Los Robles Hospital Dr. Menco gets e-mails everyday with status updates and says that it was available from a European manufacturer, but the FDA quashed it for some reason, so they are still waiting for the stateside manufacturer to catch up with the back orders. He suggested we explore the idea of giving Ed strong antibiotics on a prophylactic basis to try and prevent this infection cycle he's had after each chemo, but it depends on whether Dr. Mazur will agree to it after the next chemo since there are many reasons why its not usually done that way. We'll have that conversation with Dr. Mazur tomorrow when he comes back on his rounds.
He is eating better today - had some chicken noodle soup, crackers and canned pears for lunch. He's going to call me later when he decides what he might want for dinner. He was thinking about his favorite spaghetti from Octavio's in Camarillo.......a bit of a drive, but worth it even if he only eats a few bites! By Sunday, hopefully he'll feel like eating the chocolate-covered marshmallow bunnies he'll find in his basket when he wakes up!
Hope you are all doing well. If you happen to be driving past Los Robles Hospital and notice a knotted rope of bed sheets hanging from a 2nd floor window of the new wing, call my cell phone right away --- it's probably Ed, trying an UN-Houdini like escape. I'm bribing the nurses on the floor with Godiva truffles to keep an eye on him when I'm not there, but they do have other patients!
10:30 AM Thursday, April 21, 2011
Happy Thursday! Ed is feeling good today - just bored with being in the hospital. He slept a lot yesterday and last night after enjoying a homemade chocolate milkshake I took up in a thermos. He hasn't found any of the hospital food that appeals to him, so I'm happy to take whatever he feels like eating. It's just good to see him eat.
I called his nurse this morning and she gave me the lab results from his 5:30 AM blood work --his white count is up to 1.9 today which is a good sign that his immune system is recovering from the chemo. His reds are up too after the 2 units of blood they transfused yesterday. His platelets ae still low, and they'll decide later today if they need to give him some. He wants to come home, but it probably won't be for a day or two more so they can continue the course of IV antibiotics and give his white count more time to get up to the normal range of 4-11. Knowing he's there and very restricted from his own ideas about what's "reasonable" for him to be doing, I actually came home around 11 last night and slept so soundly that I gifted myself with some extra shut-eye this morning. Called the shop at 6:45 to make sure it wouldn't hang anyone up if I stayed home.....then I fell back to sleep and didn't move until 9 AM! I must have really lneeded it......that's usually impossible for me.
Dr. Mazur and Dr. Menco will be in at lunch time, so I'm gonna get ready to go, take Ed some soup in a thermos and head out.
By the way, for those of you who know Ida at the shop, today is her 25-year anniversary with Lloyd's Plumbing! Congratulations and loads of appreciation for her dedication and loyalty - certainly a cornerstone of the company success! Thanks Ida.....for all that you do. You're amazing!
I called his nurse this morning and she gave me the lab results from his 5:30 AM blood work --his white count is up to 1.9 today which is a good sign that his immune system is recovering from the chemo. His reds are up too after the 2 units of blood they transfused yesterday. His platelets ae still low, and they'll decide later today if they need to give him some. He wants to come home, but it probably won't be for a day or two more so they can continue the course of IV antibiotics and give his white count more time to get up to the normal range of 4-11. Knowing he's there and very restricted from his own ideas about what's "reasonable" for him to be doing, I actually came home around 11 last night and slept so soundly that I gifted myself with some extra shut-eye this morning. Called the shop at 6:45 to make sure it wouldn't hang anyone up if I stayed home.....then I fell back to sleep and didn't move until 9 AM! I must have really lneeded it......that's usually impossible for me.
Dr. Mazur and Dr. Menco will be in at lunch time, so I'm gonna get ready to go, take Ed some soup in a thermos and head out.
By the way, for those of you who know Ida at the shop, today is her 25-year anniversary with Lloyd's Plumbing! Congratulations and loads of appreciation for her dedication and loyalty - certainly a cornerstone of the company success! Thanks Ida.....for all that you do. You're amazing!
Wednesday, April 20, 2011
Noon Wednesday, April 20th, 2011
They moved Ed to his room around 2:00 AM and we had our last phone call of the evening around 2:30 AM. We both grabbed a little sleep -- they actually left Ed undisturbed for 3 whole hours until they returned to draw blood and check vitals at 5:30 AM!
Dr. Menco came in a little bit ago and Dr Mazur will be back this afternoon. They have Ed on 2 different IV antibiotics for now until the bacteria are cultured and identified (probably not until tomorrow afternoon) so Ed will be cooling his jets at Los Robles for the time being. Dr. Menco will keep him until his whites are sufficiently recovered to provide protection from infection. We were scheduled to go to UCLA on Friday for a consultation with Dr. De Vos regarding the stem cell program, but Dr. Menco says it's unlikely that we can keep that appointment, which is his gentle way of telling Ed that he'll be staying put for a few days. Ed's pretty frustrated and not happy about it, but I've confiscated his shoes, pants and car keys, so it's going to be more difficult for him to entertain thoughts of quietly slipping out unnoticed!
I did save some good news for last today....... the blood work shows that Ed's albumin is up - a good indication that his body is processing and metabolizing food. Albumin (the protein level in the blood) is, as Dr. M puts it, "kind of a good indicator of general health." Ed's was so low before - down to 1.1 but it's now it's at 3.1 (normal range is 3.5 to 5.5) so that's progress, as they say!
Time to get some work done here and I'll check in later this evening and let you know how our patient is doing.
Dr. Menco came in a little bit ago and Dr Mazur will be back this afternoon. They have Ed on 2 different IV antibiotics for now until the bacteria are cultured and identified (probably not until tomorrow afternoon) so Ed will be cooling his jets at Los Robles for the time being. Dr. Menco will keep him until his whites are sufficiently recovered to provide protection from infection. We were scheduled to go to UCLA on Friday for a consultation with Dr. De Vos regarding the stem cell program, but Dr. Menco says it's unlikely that we can keep that appointment, which is his gentle way of telling Ed that he'll be staying put for a few days. Ed's pretty frustrated and not happy about it, but I've confiscated his shoes, pants and car keys, so it's going to be more difficult for him to entertain thoughts of quietly slipping out unnoticed!
I did save some good news for last today....... the blood work shows that Ed's albumin is up - a good indication that his body is processing and metabolizing food. Albumin (the protein level in the blood) is, as Dr. M puts it, "kind of a good indicator of general health." Ed's was so low before - down to 1.1 but it's now it's at 3.1 (normal range is 3.5 to 5.5) so that's progress, as they say!
Time to get some work done here and I'll check in later this evening and let you know how our patient is doing.
Midnight Tuesday April 19, 2011
I just came home to regroup and pack our bags......I wish for a vacation, but unfortunately not. Ed developed a fever earlier this evening - 101.4 at 8:30 so I called Dr. Menco and we headed to the E.R. By 9 his fever was 102.5 and by 9:20 it was 103. Dr. Menco called ahead so they took Ed right in, despite the mash-unit like feel of the ER, crowded with people waiting in chairs and gurneys in the hallways, paramedics unloading ambulances, babies crying and portable machinery and people scurrying everywhere. They have started him on 2 IV broad-spectrum antibiotics while they culture the bacteria to determine the exact type. He had Tylenol, and ice packs under each armpit and behind his neck to bring his body temp down. After a couple of hours he starting feeling better.
Dr. Menco has admitted him and my guess is he'll stay for a couple of days while they culture the bacteria. His white count came in tonight at .3 so its dropped even further from yesterday. Given how germy hospitals are reputed to be, it's kind of scary, but the good thing is that they can monitor him very closely and take all the necessary steps to get him over the hurdle much more quickly than can be done at home. I'm packing my disinfectant wipes and plan to temporarily adopt a Howard Hughes-like philosophy toward germs. It's the best we can do under the circumstances and it's just a matter of riding out the days until his whites start to come back. We'll see Dr. M in the morning to discuss the game plan and I'll let you know when I have some info. So much for trying to stay off of the roller coaster. For a reason I don't know yet, someone has other plans....... I just hope this will be resolved more quiickly and easily than last time. Continued prayers for Ed are welcome and comforting.
Dr. Menco has admitted him and my guess is he'll stay for a couple of days while they culture the bacteria. His white count came in tonight at .3 so its dropped even further from yesterday. Given how germy hospitals are reputed to be, it's kind of scary, but the good thing is that they can monitor him very closely and take all the necessary steps to get him over the hurdle much more quickly than can be done at home. I'm packing my disinfectant wipes and plan to temporarily adopt a Howard Hughes-like philosophy toward germs. It's the best we can do under the circumstances and it's just a matter of riding out the days until his whites start to come back. We'll see Dr. M in the morning to discuss the game plan and I'll let you know when I have some info. So much for trying to stay off of the roller coaster. For a reason I don't know yet, someone has other plans....... I just hope this will be resolved more quiickly and easily than last time. Continued prayers for Ed are welcome and comforting.
Monday, April 18, 2011
7 PM Monday, April 18, 2011
Couldn't get to the blog earlier - just another manic monday...... good song title...... hoping for a Ruby Tuesday..... literally!
Ed's whites have crashed, unfortunately. He continued to feel worse yesterday and last night. I knew things were changing when he asked me to pull out all the stops with the meds and load him up! I contacted Dr. Menco around 8 PM last night and he told me to go ahead and give Ed more pain and anti-nausea meds, so I did. He was pretty miserable.
Ed had an appointment for Tuesday late afternoon for blood work but I wasn't feeling comfortable with waiting another 2 days even though Ed was feeling a little better this morning. We went in to Dr. Menco's office at noon and the blood work revealed his white count has dropped from 47,000 on Friday to less than 600 today. Anything below a thousand is basically the same as zero, so Ed is under strict instructions to avoid unnecessary contact with everyone, do vigorous hand washing and eat a neutropenic diet to minimize bacteria exposure, etc. He just needs to lay really low and ride this out until his white count starts coming up on it's own - the Neulasta just isn't able to compete with the aggressive chemo he's getting. Dr. Menco reminded him of the seriousness of the last infection and we really need to keep our fingers crossed that the next week will be infection free. Even a fever of 99 means we make a phone call or go to ER if it's after office hours. Dr. M also gave him increased pain meds and Ambien so he'll sleep at night and I hope that helps him rest more quietly.
Ed's next appointment is Thursday to check his blood again.....meantime no news is good news, but I'll let you know how successful I am at keeping him contained -- I've stocked up on disinfectants, bubble wrap and duct tape! Keep your prayers and good thoughts coming his way.
Ed's whites have crashed, unfortunately. He continued to feel worse yesterday and last night. I knew things were changing when he asked me to pull out all the stops with the meds and load him up! I contacted Dr. Menco around 8 PM last night and he told me to go ahead and give Ed more pain and anti-nausea meds, so I did. He was pretty miserable.
Ed had an appointment for Tuesday late afternoon for blood work but I wasn't feeling comfortable with waiting another 2 days even though Ed was feeling a little better this morning. We went in to Dr. Menco's office at noon and the blood work revealed his white count has dropped from 47,000 on Friday to less than 600 today. Anything below a thousand is basically the same as zero, so Ed is under strict instructions to avoid unnecessary contact with everyone, do vigorous hand washing and eat a neutropenic diet to minimize bacteria exposure, etc. He just needs to lay really low and ride this out until his white count starts coming up on it's own - the Neulasta just isn't able to compete with the aggressive chemo he's getting. Dr. Menco reminded him of the seriousness of the last infection and we really need to keep our fingers crossed that the next week will be infection free. Even a fever of 99 means we make a phone call or go to ER if it's after office hours. Dr. M also gave him increased pain meds and Ambien so he'll sleep at night and I hope that helps him rest more quietly.
Ed's next appointment is Thursday to check his blood again.....meantime no news is good news, but I'll let you know how successful I am at keeping him contained -- I've stocked up on disinfectants, bubble wrap and duct tape! Keep your prayers and good thoughts coming his way.
Sunday, April 17, 2011
4:00 PM Sunday April 17, 2011
Hej . . . (that's hello in Swedish). The weekend went by very quickly, but I wish Ed had been feeling better. Yesterday he was at least feeling well enough to sit on the patio most of the day with Kristin and Pat, and this morning he was feeling okay, but since about noon he's felt pretty lousy. I think the chemo "nadering" is most of the issue, plus he tried to eat a little more the past couple of days and his body is having other ideas it seems. He has some serious acid reflux type feelings and a general feeling of malais - just a crummy, fluish type of feeling with no energy. We're thankful for no fevers or other dangerous symptoms, but it's just no fun for him to feel like this either.
He was hoping to go out and get some smaller pants today while I checked out the Scandanavian Festival at Cal Lutheran U (hence the greeting), but it just wasn't in the cards. When I got home he was still resting in the recliner in spite of his best intentions and he's frustrated that it was such a beautiful day and he couldn't be out enjoying it. This whole thing would probably be a lot easier on him if we lived in Minnesota or something - these warm, sunny days, the motorcyle right outside in the garage, and the motorhome at the shop just keep beaconing. Hopefully he won't have to wait much longer. We're just gonna have to work extra hard to get some weight back on him before he can muscle those big toys around again - today he weighted in at 129 pounds. (He wanted me to take a picture of his butt and post it to the blog to amuse all of you...... I'll try and continue to lobby for decorum as long as possible but I can't make any promises!)
The weight issue is really a struggle -- we'll just have to continue to get some additional calories into him by eating when he can and by making adjustments as much as possible to the TPN. He's already getting 108 grams of protein a day just in the TPN (the average person eats about half that amount in a day) but it's just not as simple as upping everything. The veins and organs can only process so much and they have to balance it all out. We're just kind of racing the chemo - the hope and assumption is that when the chemo does it's job, the intestines will heal and become functional and the digestive process will return to normal and food absorption and weight gain will follow. That's another reason why we need to keep on track with the chemo schedule and not have infection set-backs and delays. It's a constant vigil and pyramid of decisions and balancing of symptoms. Thank heaven for the highly trained and dedicated team of doctors and nurses he has! Can you imagine what people did 20 years ago or a hundred years ago???? Ed has been really dedicated to trying to add some food to his day (at the urging of the doctors) and has had yogurt, white rice, soup broths, ice cream and pudding. Some of it doesn't taste the same (he still has the metallic taste in his mouth that is common with chemo) and it's not an easy task, but he's doing his best to try.
Well, we're going to watch a movie and then enjoy the sunset from the backyard. The fog is starting to roll in and the birds are chirping like mad, but it's a lovely view from the bedroom sliding doors.
By the way, the Scandanavian Festival was pretty awesome. Lots of delicious food, festive music, kid crafts, Nordic vendors and blonde-haired people! Picked up a couple of unique cooking utensils and watched my granddaughter Hope paint a real trout (whose spirit is in trout heaven) and use it as a stamp for painting a canvas tote bag to use for grocery shopping! The swedish meatballs, swedish pancakes and abelskiver were yummy. Absolutely a new family tradition to attend each year in April. Coincidence that Ed is receiving the chemotherapy regimen named for the "Nordic" research group who lead the world in mantle cell lymphoma discoveries??????? I think not! By this time next year he may just have a new hankering for lutefisk with his Coors Light! That would be fantastic.
He was hoping to go out and get some smaller pants today while I checked out the Scandanavian Festival at Cal Lutheran U (hence the greeting), but it just wasn't in the cards. When I got home he was still resting in the recliner in spite of his best intentions and he's frustrated that it was such a beautiful day and he couldn't be out enjoying it. This whole thing would probably be a lot easier on him if we lived in Minnesota or something - these warm, sunny days, the motorcyle right outside in the garage, and the motorhome at the shop just keep beaconing. Hopefully he won't have to wait much longer. We're just gonna have to work extra hard to get some weight back on him before he can muscle those big toys around again - today he weighted in at 129 pounds. (He wanted me to take a picture of his butt and post it to the blog to amuse all of you...... I'll try and continue to lobby for decorum as long as possible but I can't make any promises!)
The weight issue is really a struggle -- we'll just have to continue to get some additional calories into him by eating when he can and by making adjustments as much as possible to the TPN. He's already getting 108 grams of protein a day just in the TPN (the average person eats about half that amount in a day) but it's just not as simple as upping everything. The veins and organs can only process so much and they have to balance it all out. We're just kind of racing the chemo - the hope and assumption is that when the chemo does it's job, the intestines will heal and become functional and the digestive process will return to normal and food absorption and weight gain will follow. That's another reason why we need to keep on track with the chemo schedule and not have infection set-backs and delays. It's a constant vigil and pyramid of decisions and balancing of symptoms. Thank heaven for the highly trained and dedicated team of doctors and nurses he has! Can you imagine what people did 20 years ago or a hundred years ago???? Ed has been really dedicated to trying to add some food to his day (at the urging of the doctors) and has had yogurt, white rice, soup broths, ice cream and pudding. Some of it doesn't taste the same (he still has the metallic taste in his mouth that is common with chemo) and it's not an easy task, but he's doing his best to try.
Well, we're going to watch a movie and then enjoy the sunset from the backyard. The fog is starting to roll in and the birds are chirping like mad, but it's a lovely view from the bedroom sliding doors.
By the way, the Scandanavian Festival was pretty awesome. Lots of delicious food, festive music, kid crafts, Nordic vendors and blonde-haired people! Picked up a couple of unique cooking utensils and watched my granddaughter Hope paint a real trout (whose spirit is in trout heaven) and use it as a stamp for painting a canvas tote bag to use for grocery shopping! The swedish meatballs, swedish pancakes and abelskiver were yummy. Absolutely a new family tradition to attend each year in April. Coincidence that Ed is receiving the chemotherapy regimen named for the "Nordic" research group who lead the world in mantle cell lymphoma discoveries??????? I think not! By this time next year he may just have a new hankering for lutefisk with his Coors Light! That would be fantastic.
Friday, April 15, 2011
3 PM Friday, April 18, 2011
We're both here working at the shop today - Ida took a hardly-ever-happens but well-deserved day off. Talked to Dr. Menco and Ed's whites are holding their own -- well, actually their super-stimulated right now from the Neulasta shot and are at 47,000.....yes, 47,000 ! Quite a high point from the low of .1 (100). He is still under orders to lay low (but no masks required) and we see Dr. Menco on Tuesday for blood work again. We are keeping our fingers crossed that the Neulasta will be able to sustain the white count through the "nadering" window of 4-11 days post-chemo. Today is day 4, so prayers and optimism are welcome. This is the third chemo out of the 6 that are scheduled, so it feels good to be nearing THAT half-way mark and to have him be feeling so good at home!
Ed has been busy charging the batteries on the motorhome and puttering around the office -- I'm about to go enforce a 20-minute rest while I infuse his antibiotics - he can watch Oprah while he's sitting still --- I knew that big screen TV in his office would be good for something besides the Factor at 5 PM!
Have a splendid weekend everyone. If you live in our area and are looking for something to do besides rotate the wheels on your refrigerator, there's a Scandanavian festival at CLU this weekend. I'm going to try and sneak up there on Sunday with my cousin, my daughters and my grandkids to scope out sources for additions to my family's annual Swedish Meatball Night at Christmas. I will NOT be torturing Ed with this faire ..... once a year with the meatballs and straw goats is his limit. I know he's anxious to get outside and enjoy the warm weather, so I expect the patio furniture will get some use. Time to start working on the lake-house tan ! Should be a restful and peaceful weekend .... Tom.... I could probably use that ball and chain, but I'll do the best I can until you can drop it off.
I'll check in over the weekend for sure.
Ed has been busy charging the batteries on the motorhome and puttering around the office -- I'm about to go enforce a 20-minute rest while I infuse his antibiotics - he can watch Oprah while he's sitting still --- I knew that big screen TV in his office would be good for something besides the Factor at 5 PM!
Have a splendid weekend everyone. If you live in our area and are looking for something to do besides rotate the wheels on your refrigerator, there's a Scandanavian festival at CLU this weekend. I'm going to try and sneak up there on Sunday with my cousin, my daughters and my grandkids to scope out sources for additions to my family's annual Swedish Meatball Night at Christmas. I will NOT be torturing Ed with this faire ..... once a year with the meatballs and straw goats is his limit. I know he's anxious to get outside and enjoy the warm weather, so I expect the patio furniture will get some use. Time to start working on the lake-house tan ! Should be a restful and peaceful weekend .... Tom.... I could probably use that ball and chain, but I'll do the best I can until you can drop it off.
I'll check in over the weekend for sure.
Thursday, April 14, 2011
2:30 PM Thursday April 14, 2011
Just the quickest of notes to update ...... busier than a one-armed paper hanger today! Ed is feeling really good after a solid night's slumber - no hiccups! It was wonderful to know he was getting healing and restful sleep - just what he needed. I've given him a "project list" for today that included movie watching, napping and contemplating his navel. I've been in the office except for running home to disconnect his TPN and give him his IV antibiotics, so I call and check on him frequently. The morning went smoothly with no violations of acitivity level, but I called a few minutes ago and he was moving outdoor furniture and hosing down the patios!!!! Luckily his Mom is on her way over to visit - that'll put the kabosh on his over doing...... I'm considering hiring her on a regular basis to "Ed-sit" so I can work and not worry about leaving him to his own devices!!! If you see a posting on Craig's List for the job, know it's because it's taking more than one of us to hold him down and convince him of the value in "reasonable" goals and appropriate self-care. Definately a full time job.....and then some. Any volunteers???? I knew I should have added "learn a foreign language" to the project list......that might have kept him busy a little longer....... :)
Dashing home for more IV antibiotics. After we get the blood test results tomorrow early afternoon I'll let you all know his status, unless noteworthy or humerous topics come up in the meantime. I welcome all suggestions for keeping Ed quietly busy for the next week or so ........
Dashing home for more IV antibiotics. After we get the blood test results tomorrow early afternoon I'll let you all know his status, unless noteworthy or humerous topics come up in the meantime. I welcome all suggestions for keeping Ed quietly busy for the next week or so ........
Wednesday, April 13, 2011
5:30PM Wednesday, April 13, 2011
You guessed it.....The Factor is on......we're in the shusshing AND dozing no-spin zone -- I'm watching the Food Channel and making a BLT panini and Ed is dozing in his recliner. He's pretty tired after being out and about all day and not getting any sleep last night. The hiccups actually kept him up most of the night!
He went to the office with me at 6:30 this morning! Tyler came and picked him up around 11 and they went to Camarillo for a quick peek at the hot rod progress. We ran a few errands this afternoon, pulled a couple of permits in Moorpark and got him just after 5. The hiccup medication (Thorazine) can make him sleepy too, so the combination of the meds and lack of sleep have really put him out for a bit I think. He has agreed to really lay low the next few days since the "nadering" window after the chemo is 4 to 11 days and we ABSOLUTELY don't want a repeat of the infection disaster he had to go through after the last chemo. I think as much sleep as he can get will be very good for him for a couple of days.
Yes, Jeanne, the apple pie a la mode reference was from When Harry Met Sally -- one of my fav silly
not-just-for-chicks flicks. We have a couple of movies to watch tonight - I think we must be some of the last people on earth who still drive to Blockbuster and rent movies.....so it will be a relaxing evening. I'm really hoping the hiccups won't return - it's actually very exhausting and uncomfortable for him. Enough already.....
Hope you all have a relaxing evening as well.
He went to the office with me at 6:30 this morning! Tyler came and picked him up around 11 and they went to Camarillo for a quick peek at the hot rod progress. We ran a few errands this afternoon, pulled a couple of permits in Moorpark and got him just after 5. The hiccup medication (Thorazine) can make him sleepy too, so the combination of the meds and lack of sleep have really put him out for a bit I think. He has agreed to really lay low the next few days since the "nadering" window after the chemo is 4 to 11 days and we ABSOLUTELY don't want a repeat of the infection disaster he had to go through after the last chemo. I think as much sleep as he can get will be very good for him for a couple of days.
Yes, Jeanne, the apple pie a la mode reference was from When Harry Met Sally -- one of my fav silly
not-just-for-chicks flicks. We have a couple of movies to watch tonight - I think we must be some of the last people on earth who still drive to Blockbuster and rent movies.....so it will be a relaxing evening. I'm really hoping the hiccups won't return - it's actually very exhausting and uncomfortable for him. Enough already.....
Hope you all have a relaxing evening as well.
Tuesday, April 12, 2011
11 PM Tuesday, April 12, 2011
Just making a cup of tea while getting ready for bed, so I thought I'd update while I wait for the teapot to boil....
We went to Dr. Menco's today and Ed got his Neulasta injection. We also chatted briefly about the longer term treatment plans and discussed stem cell transplant information. It's clearly a treatment we need to research further, so we'll be consulting with Dr. De Voss from UCLA as well as the City of Hope to get more information. There is certainly an overwhelming amount of information and research -- thank heaven for the internet and wireless access! As much as Ed and I complain about "technology" and texting and cell phones being so irritating, when you really need information, and fast......it's hard to remember a time when we had to use the library! Another blessing - even though I am a card-carrying member of and frequent visitor to the Thousand Oaks Library!
Dr. Mazur checked Ed today and said everything seems to be going well with the antibiotics, but he wants Ed to continue on the IV one (Cefazolin) for 4 weeks (3 times a day). But the biggest news of the day --- Ed had a small bowl of ice cream today. Dr. Johnson prescribed a medication today that may help with the digestion process, so we'll see how it all goes. Ed started feeling a little crummy tonight and has had a pretty non-stop case of hiccups for several hours, but he's managing through it. It was an emotional day and physically tiring as well. He's pretty tired tonight, so hopefully he'll get a solid block of sleep now that all the meds for the night are finished and he's hooked up to the TPN. (Tonight's imaginery menu - pepperoni pizza and apple pie a la mode - heated of course with real whipped cream, since if there isn't real whipped cream, there's no point in heating the pie and the ice cream would have to be on the side, not on top.) Movie buffs ?????
Okay, clearly it's late and I'm rambling. Regular blog readers are probably used to it by now, but for the neophite blogger, I have probably far exceeded the requisite threshhold for HUH?????
We both thank you each and every one for your continued and steadfast support, offers of help, encouraging words and faithful log-ins. There is still a long road ahead, but like any race worth running, all of you who have and continue to show up and encourage him from all sides, make each step easier and victory feel closer. It's truly inspiring and awesome. Thank you, thank you, thank you. Goodnight.
We went to Dr. Menco's today and Ed got his Neulasta injection. We also chatted briefly about the longer term treatment plans and discussed stem cell transplant information. It's clearly a treatment we need to research further, so we'll be consulting with Dr. De Voss from UCLA as well as the City of Hope to get more information. There is certainly an overwhelming amount of information and research -- thank heaven for the internet and wireless access! As much as Ed and I complain about "technology" and texting and cell phones being so irritating, when you really need information, and fast......it's hard to remember a time when we had to use the library! Another blessing - even though I am a card-carrying member of and frequent visitor to the Thousand Oaks Library!
Dr. Mazur checked Ed today and said everything seems to be going well with the antibiotics, but he wants Ed to continue on the IV one (Cefazolin) for 4 weeks (3 times a day). But the biggest news of the day --- Ed had a small bowl of ice cream today. Dr. Johnson prescribed a medication today that may help with the digestion process, so we'll see how it all goes. Ed started feeling a little crummy tonight and has had a pretty non-stop case of hiccups for several hours, but he's managing through it. It was an emotional day and physically tiring as well. He's pretty tired tonight, so hopefully he'll get a solid block of sleep now that all the meds for the night are finished and he's hooked up to the TPN. (Tonight's imaginery menu - pepperoni pizza and apple pie a la mode - heated of course with real whipped cream, since if there isn't real whipped cream, there's no point in heating the pie and the ice cream would have to be on the side, not on top.) Movie buffs ?????
Okay, clearly it's late and I'm rambling. Regular blog readers are probably used to it by now, but for the neophite blogger, I have probably far exceeded the requisite threshhold for HUH?????
We both thank you each and every one for your continued and steadfast support, offers of help, encouraging words and faithful log-ins. There is still a long road ahead, but like any race worth running, all of you who have and continue to show up and encourage him from all sides, make each step easier and victory feel closer. It's truly inspiring and awesome. Thank you, thank you, thank you. Goodnight.
9:30 AM Tuesday April 12, 2011
Things went very well yesterday - it was a long day of sitting in a chair for Ed with the various IV bags and injections, but Dr. Menco has big lounge chairs with a beautiful view out the window and Ed watched a movie and slept, so the time wasn't so bad.
He felt pretty good yesterday afternoon and evening - Kristin came by and watched a movie - and Ed slept pretty well. He started the Prednisone this morning along with his cadre of other meds, and so far so good. I'm at the office but I just talked to him and he and Tyler were getting ready to take a walk. I'll be going home in an hour to relieve him of his TPN backpack - and I'm sure he'll want Tyler to take him to Camarillo for a quick peek at the hot rod progress. I just love that we have so many "support" meds to make the chemo side effects manageable - I don't think 20 years ago, ANYONE felt like walking the neighborhood the day after they had chemo!
The drainage tubes came out with no problems yesterday, and even though we love the surgeon, he's off our dance card list for future appointments. Maybe he'll stop by for a beer and a BBQ sometime instead. THAT would be wonderful.
Ed gets his Neulasta shot this afternoon and then we see Dr. Mazur about the progress of getting rid of the infections. I'll give you an updated report this evening (if I don't fall asleep during a movie like I did last night!! )
It's nice to feel like we're back on the merry-go-round instead of the roller-coaster. I bought Ed hot air balloon ride tickets as one of his Christmas presents.....and if all goes well for the next few weeks, I'm going to book it for sometime in late May. THAT will be a very fun trip with lots of reasons to be soaring !
He felt pretty good yesterday afternoon and evening - Kristin came by and watched a movie - and Ed slept pretty well. He started the Prednisone this morning along with his cadre of other meds, and so far so good. I'm at the office but I just talked to him and he and Tyler were getting ready to take a walk. I'll be going home in an hour to relieve him of his TPN backpack - and I'm sure he'll want Tyler to take him to Camarillo for a quick peek at the hot rod progress. I just love that we have so many "support" meds to make the chemo side effects manageable - I don't think 20 years ago, ANYONE felt like walking the neighborhood the day after they had chemo!
The drainage tubes came out with no problems yesterday, and even though we love the surgeon, he's off our dance card list for future appointments. Maybe he'll stop by for a beer and a BBQ sometime instead. THAT would be wonderful.
Ed gets his Neulasta shot this afternoon and then we see Dr. Mazur about the progress of getting rid of the infections. I'll give you an updated report this evening (if I don't fall asleep during a movie like I did last night!! )
It's nice to feel like we're back on the merry-go-round instead of the roller-coaster. I bought Ed hot air balloon ride tickets as one of his Christmas presents.....and if all goes well for the next few weeks, I'm going to book it for sometime in late May. THAT will be a very fun trip with lots of reasons to be soaring !
Monday, April 11, 2011
Noon Monday, April 11, 2011
We're getting used to being so flexible and able to shift gears at a moment's notice -- if only we were younger, we would have the beginnings of a skill set toward a career in Cirque du Soleil......
We arrived at Dr. Menco's for the Rituxan today and since Ed has felt so good and the fevers are under control, they offered him the option of combining the Rituxan and the chemo into one longer infusion appointment today and then having the Nuelasta injection tomorrow and starting the Prednisone tomorrow as well. Ed opted for the combo appointment so he won't have to sit again tomorrow for several houirs. So he is there now until about 3:30 to have everything and we can go straight from there to the surgeon's office and get the drains taken out from the surgery. It's nice to combine several appointments to cut down on the driving back and forth.
So I'll let you know later this evening how it's all going. Keep good thoughts and prayers for a smooth week and for the Nuelasta to be super effective this time and keep him from getting an infection!
Sorry I didn't hear the doorbell last night, Lyndsay and Peter. Next time just knock louder if you know we're home........us older people don't hear as well as we used to!
More later.........
We arrived at Dr. Menco's for the Rituxan today and since Ed has felt so good and the fevers are under control, they offered him the option of combining the Rituxan and the chemo into one longer infusion appointment today and then having the Nuelasta injection tomorrow and starting the Prednisone tomorrow as well. Ed opted for the combo appointment so he won't have to sit again tomorrow for several houirs. So he is there now until about 3:30 to have everything and we can go straight from there to the surgeon's office and get the drains taken out from the surgery. It's nice to combine several appointments to cut down on the driving back and forth.
So I'll let you know later this evening how it's all going. Keep good thoughts and prayers for a smooth week and for the Nuelasta to be super effective this time and keep him from getting an infection!
Sorry I didn't hear the doorbell last night, Lyndsay and Peter. Next time just knock louder if you know we're home........us older people don't hear as well as we used to!
More later.........
Sunday, April 10, 2011
7 PM Sunday, April 10, 2011
Wow! The weekend went by SOOOO fast....... but it was great to be home and have Ed feeling well enough to have visitors, and to get up and go out too. Thanks, Tom for the beautiful flowers (roses and stargazer lillies which have all opened - love them!) and most of all for the gift of your time, driving up from Huntington Beach after a long work week to visit. Leo & Georgette came by and Ryan and Chantel as well so it was a busy Saturday. We both really enjoyed seeing all of you....it feels good to have family and friends around. It's always been such a core part of our lives and we've really missed the connections and conversations and friendships.
Today, Kent Truman came by and we had a great visit (lots of hot rod talk) and my daughter Stacy and her husband Gary came by with their adorable tribe (Luke, Hope and Cade) to have an outdoor adventure in the backyard at Grandma Liz and Ed's house! Lots of lizards, flower picking and tromping through the shrubbery, rock climbing and a few just-in-the-knick-of-time "saves" as not-yet-2 year old Cade followed his big brother and sister up and down the patio stairs and almost too close to the pool. They were so much fun, scampering and exploring and chattering away about karate, Disneyland, bugs, critters and "Carolyn", the lady who drives the trash truck in their neighborhood! Kent, you have 3 little fans who'd love a ride in your dump truck next time - Ed has some serious competition for the tractor - you two could start a side business doing kid's parties with your heavy equipment!
Ed and I drove out to his Mom's house in Camarillo and then stopped at Lazy Dog Cafe at the Oaks Mall for a quick dinner - Ed insisted we stop, so he watched me eat. (I ordered goat cheese and beet salad and raw ahi tuna, so he wouldn't feel bad watching me eat stuff HE'D like to eat - he doesn't like any of that stuff.) He's really wanting to start eating again - but so far, it seems his body has other plans and has been quite uncooperative the last 2 times he's tried. With everything that's scheduled this week, he wants to wait again until he's out of the time zone for the anticipated "feeling crummy" period and then he'll try eating again He'll get the 3-hour Rituxan infusion in the morning on Monday, drainage tubes taken out of his chest tomorrow afternoon, chemo Tuesday morning for 3 hours, blood tests for the infection on Tuesday afternoon, the Nuelasta shot on Wednesday and then hopefully, a quiet rest of the week in terms of doctor appointments. There is an emotional aspect of the chemo that takes a little getting used to - - the idea of voluntarily poisoning yourself (or driving someone you love to have it done ) is surreal to say the least. Understanding the concept objectively isn't so difficult, it's just hard to explain the feelings and emotional conflict. The company this weekend has been a welcome distraction and source of comfort.
I'll let you all know how Monday goes, but it may be late in the day tomorrow before I get to the blog. Ed is now peacefully dozing through 60 Minutes. He got some good color in the sun the past 2 days, and he looks content. A cup of tea, in one of my Mom's china tea cups, is next on my "to do" list, Ed's antibiotics and last meds at 9, then an early night to hit the hay.
Sleep well.
Today, Kent Truman came by and we had a great visit (lots of hot rod talk) and my daughter Stacy and her husband Gary came by with their adorable tribe (Luke, Hope and Cade) to have an outdoor adventure in the backyard at Grandma Liz and Ed's house! Lots of lizards, flower picking and tromping through the shrubbery, rock climbing and a few just-in-the-knick-of-time "saves" as not-yet-2 year old Cade followed his big brother and sister up and down the patio stairs and almost too close to the pool. They were so much fun, scampering and exploring and chattering away about karate, Disneyland, bugs, critters and "Carolyn", the lady who drives the trash truck in their neighborhood! Kent, you have 3 little fans who'd love a ride in your dump truck next time - Ed has some serious competition for the tractor - you two could start a side business doing kid's parties with your heavy equipment!
Ed and I drove out to his Mom's house in Camarillo and then stopped at Lazy Dog Cafe at the Oaks Mall for a quick dinner - Ed insisted we stop, so he watched me eat. (I ordered goat cheese and beet salad and raw ahi tuna, so he wouldn't feel bad watching me eat stuff HE'D like to eat - he doesn't like any of that stuff.) He's really wanting to start eating again - but so far, it seems his body has other plans and has been quite uncooperative the last 2 times he's tried. With everything that's scheduled this week, he wants to wait again until he's out of the time zone for the anticipated "feeling crummy" period and then he'll try eating again He'll get the 3-hour Rituxan infusion in the morning on Monday, drainage tubes taken out of his chest tomorrow afternoon, chemo Tuesday morning for 3 hours, blood tests for the infection on Tuesday afternoon, the Nuelasta shot on Wednesday and then hopefully, a quiet rest of the week in terms of doctor appointments. There is an emotional aspect of the chemo that takes a little getting used to - - the idea of voluntarily poisoning yourself (or driving someone you love to have it done ) is surreal to say the least. Understanding the concept objectively isn't so difficult, it's just hard to explain the feelings and emotional conflict. The company this weekend has been a welcome distraction and source of comfort.
I'll let you all know how Monday goes, but it may be late in the day tomorrow before I get to the blog. Ed is now peacefully dozing through 60 Minutes. He got some good color in the sun the past 2 days, and he looks content. A cup of tea, in one of my Mom's china tea cups, is next on my "to do" list, Ed's antibiotics and last meds at 9, then an early night to hit the hay.
Sleep well.
Saturday, April 9, 2011
2:00 PM Saturday, April 9, 2011
No news is good news.......in our case, very much so the past couple of days. We've really just had some most enjoyable quiet time, especially today! It's sunny and serene in the backyard - we've been out most of the day soaking up the rays and the fresh air. We took a long and relaxing walk for about 40 minutes this morning - got reaquainted with our neighborhood after feeling away for the past 2 months! Ed's friend Tom Chesari ("TC" from the blog comments almost daily - :) ) came up from Huntington Beach to visit and he helped Ed bring the new patio furniture from the garage to the patio.
After we lost the sun behind the huge trees in the backyard, we moved them down by the firepit, lit the fire ring and enjoyed the warmth! (It's not very warm out today with the breeze, but the sun is irresistible.) Tom left a bit ago after a great visit and Ed is dozing contently in the chair, so I thought I'd dash in and update the blog. By the way, we were enjoying some bird watching with the new binoculars our neighbors Peter and Lyndsay dropped by last week as a wedding gift. For those of you who've known Ed for any length of time.....did you ever think you'd see the day that he would use binoculars to actually watch "wildlife" ????......I mean the kind that doesn't involve a string bikini????? I know...... me either. Thanks, Peter and Lyndsay..... a very thoughtful gift. We appreciate it very much.
Our friends Leo and Georgette will be over later today and Ryan and Chantel as well...... so it will be a nice relaxing and social day. Tomorrow we may go for a drive to get out a little before we settle in for the week of chemo starting Monday, but we'll be around at least part of the day if you want to get a spot on Ed's "dance card".
The fevers are gone, thank goodness, but he'll continue on both antibiotics for another week or so just to make sure. He's been feeling really quite well the past 2 days. Every day this way is a great blessing.
We hope you are all having a splendid weekend with rest, recreation and rejuvenation on everyone's schedule!
Ed & Liz
After we lost the sun behind the huge trees in the backyard, we moved them down by the firepit, lit the fire ring and enjoyed the warmth! (It's not very warm out today with the breeze, but the sun is irresistible.) Tom left a bit ago after a great visit and Ed is dozing contently in the chair, so I thought I'd dash in and update the blog. By the way, we were enjoying some bird watching with the new binoculars our neighbors Peter and Lyndsay dropped by last week as a wedding gift. For those of you who've known Ed for any length of time.....did you ever think you'd see the day that he would use binoculars to actually watch "wildlife" ????......I mean the kind that doesn't involve a string bikini????? I know...... me either. Thanks, Peter and Lyndsay..... a very thoughtful gift. We appreciate it very much.
Our friends Leo and Georgette will be over later today and Ryan and Chantel as well...... so it will be a nice relaxing and social day. Tomorrow we may go for a drive to get out a little before we settle in for the week of chemo starting Monday, but we'll be around at least part of the day if you want to get a spot on Ed's "dance card".
The fevers are gone, thank goodness, but he'll continue on both antibiotics for another week or so just to make sure. He's been feeling really quite well the past 2 days. Every day this way is a great blessing.
We hope you are all having a splendid weekend with rest, recreation and rejuvenation on everyone's schedule!
Ed & Liz
Thursday, April 7, 2011
Noon - Thursday April 7, 2011
Well, it seems the superman cape I've been borrowing from Ed lately is getting a tad threadbare in a spot or two - mostly from overuse I guess. I slept in today and didn't go to the shop or get up and do anything! I can't rememnber that last time I was horizontal at 7:30 in the morning, but today was the day. It felt good and I'm hoping that we will both have more relaxing times ahead with a steady treatment course and fewer roller coaster rides for a while. Ed was pretty tired at the end of the day since he didn't nap yesterday at all, so he slept from about 6:30 PM and then unfortunately woke up around 3:30 and had a hard time going back to sleep. But he layed quietly for a long time and then insisted I not get up at 5:15 and go to the office like I usually do. It felt good!!! Ed's fever was very low grade this morning - only 99.3, so that's good progress - not even enough to take Tylenol. Seems that things are on the upswing and that feels really good.
We have not much on our schedule the next 3 days - Ed is home waiting for Lisa to come and draw blood and change the PICC line dressing today and then he'll probably have Tyler bring him to the shop for a little bit. I'm here at the office and will get my taxes done late this afternoon, just in the nick of time, and I'm looking forward to having that off my "to do" list.
Hopefully the weather will brighten up a tad for the weekend and we'll get some use out of the new patio furniture that Tyler and Ed picked up yesterday - it will feel wonderful to sit and visit with friends and family in our own backyard!
Hope you all have a smooth and productive day! Come see us if you're in the area, even if it's just for a few minutes - we'd love to see you.
We have not much on our schedule the next 3 days - Ed is home waiting for Lisa to come and draw blood and change the PICC line dressing today and then he'll probably have Tyler bring him to the shop for a little bit. I'm here at the office and will get my taxes done late this afternoon, just in the nick of time, and I'm looking forward to having that off my "to do" list.
Hopefully the weather will brighten up a tad for the weekend and we'll get some use out of the new patio furniture that Tyler and Ed picked up yesterday - it will feel wonderful to sit and visit with friends and family in our own backyard!
Hope you all have a smooth and productive day! Come see us if you're in the area, even if it's just for a few minutes - we'd love to see you.
Wednesday, April 6, 2011
5:00 PM Wednesday, April 6, 2011
Good news! Dr. Menco saw the CT scan and it shows the lymph nodes are shrinking - the chemo is melting the cancer! Thank goodness for some good news after the couple of rough weeks Ed has been through. He also said he didn't see any obstructions in the intestines, so he's encouraging Ed to try to eat small amounts of soft food and see if his digestive system will begin to tolerate some food. We went home and Ed ate a few tablespoons of scrambled eggs and said it tasted good. That's a lot of progress for one day - thank goodness!
As in all of life, there is no free lunch......so along with the good news came the immediate scheduling of the next round of chemo - Monday and Tuesday this next week - Rituxan on Monday and the Maxi-Chop package on Tuesday. Both will be done outpatient in Dr. Menco's office if everything stays good over the weekend. We'll have blood cultures done on Friday and Ed is scheduled to have the drainage tubes taken out of his chest on Friday as well. He's still running some fevers, but hopefully the antibiotics will be effective at wiping out the bacteria that's the root of those issues.
Wanted to share the good news - your prayers and energy are finding their way to Ed for sure! Call him or call me if you want to come visit - the next few days will probably be a good time -- we expect that after the chemo there will be another period of low white counts and restricted visiting, so now's your chance. We don't have anything planned for the weekend, so let us know if you're in the area. We'll be home hopefully eating and cooking and eating and cooking and eating.......me doing the cooking and Ed doing the eating......as it should be! Come celebrate the good news ..... I'll have snacks!
As in all of life, there is no free lunch......so along with the good news came the immediate scheduling of the next round of chemo - Monday and Tuesday this next week - Rituxan on Monday and the Maxi-Chop package on Tuesday. Both will be done outpatient in Dr. Menco's office if everything stays good over the weekend. We'll have blood cultures done on Friday and Ed is scheduled to have the drainage tubes taken out of his chest on Friday as well. He's still running some fevers, but hopefully the antibiotics will be effective at wiping out the bacteria that's the root of those issues.
Wanted to share the good news - your prayers and energy are finding their way to Ed for sure! Call him or call me if you want to come visit - the next few days will probably be a good time -- we expect that after the chemo there will be another period of low white counts and restricted visiting, so now's your chance. We don't have anything planned for the weekend, so let us know if you're in the area. We'll be home hopefully eating and cooking and eating and cooking and eating.......me doing the cooking and Ed doing the eating......as it should be! Come celebrate the good news ..... I'll have snacks!
Tuesday, April 5, 2011
1:00 PM Tuesday, April 5, 2011
Just a quick update for today. Ed had his CT scan today but we won't have any results until tomorrow when we see Dr. Menco late morning. We are really hoping and praying for good news about the efficacy of the chemo so far. There's also a possibility that the doctors might be able to see something about the small intestines as well to determine if they are beginning to heal and return to normal so that Ed can try eating again soon.
Those darned fevers were back most of the night - the highest was 101.9 - just under the 102 threshhold of comfort level for staying at home. The Tylenol continues to work to reduce the fevers, but we really have to get to the underlying source - hence our appointment in an hour with Dr. Mazur. Hopefully it will be something siomple to fix with maybe an additional or different antibiotic.
Thanks, Jeanne for the help with the blogging comments. I guess since the blog is set up thru Google, they want everyone to have a Google e-mail. Captive audience I guess.
I'll update later when we have some news. (We went to Do-It Center today and got a couple of super comfortable padded patio chairs for outside. Since Ed's so enjoying the sunshine, and we'll probably be home a lot more than we normally would be at this time of year....it seems like something that we'll enjoy a lot. Any of you who come to visit can try out the new chairs!......:)
Those darned fevers were back most of the night - the highest was 101.9 - just under the 102 threshhold of comfort level for staying at home. The Tylenol continues to work to reduce the fevers, but we really have to get to the underlying source - hence our appointment in an hour with Dr. Mazur. Hopefully it will be something siomple to fix with maybe an additional or different antibiotic.
Thanks, Jeanne for the help with the blogging comments. I guess since the blog is set up thru Google, they want everyone to have a Google e-mail. Captive audience I guess.
I'll update later when we have some news. (We went to Do-It Center today and got a couple of super comfortable padded patio chairs for outside. Since Ed's so enjoying the sunshine, and we'll probably be home a lot more than we normally would be at this time of year....it seems like something that we'll enjoy a lot. Any of you who come to visit can try out the new chairs!......:)
Monday, April 4, 2011
6:45 PM Monday, April 4, 2011
Just a quick note......I know some of you are still not able to post comments on the blog.....don't know why and I wish I could be of more help with that, but as an alternative, feel free to send Ed messages directly to his e-mail account: eengelker5741@hotmail.com
He doesn't look at his e-mails every day, but he does look often and will always reply, so I hope that helps some of you who are frustrated with the blog and are hesitant to call. Once he's feeling much better and is stronger, he'll undoubtedly be back to taking lots of phone calls, etc., but e-mail is great because he can get to it as he feels up to it. Leave your phone number in your message too if you think he may not have it stored in his cell phone. Before you know it, you'll be getting an invite to a party of some sort if I know Ed! Be prepared......
He doesn't look at his e-mails every day, but he does look often and will always reply, so I hope that helps some of you who are frustrated with the blog and are hesitant to call. Once he's feeling much better and is stronger, he'll undoubtedly be back to taking lots of phone calls, etc., but e-mail is great because he can get to it as he feels up to it. Leave your phone number in your message too if you think he may not have it stored in his cell phone. Before you know it, you'll be getting an invite to a party of some sort if I know Ed! Be prepared......
6:15 PM Monday April 4, 2011
We're still home and it turned out to be a beautiful day. I went to the office early and came home around 9:30 AM to disconnect Ed's TPN for the day. He showered and then spent most of the day outdoors, enjoying the peace and quiet, the sunshine and the warmth. I don't think I've ever seen him sit in one spot for that long! He was just soaking it up like a sponge!
Glenn Nelson came by this afternoon and our neighbor Craig Fletcher viisted too. I think Ed was grateful for the opportunity for some guy talk - he's been stuck with me and a bunch of nurses (mostly female but not all) for quite a while now... not that Ed is normally the kind of guy who minds being "stuck" with a bunch of women, nurses or otherwise.....it's just usually under different circumstances!
Dr. Mazur is still waiting for some blood and urine cultures which won't be in until tomorrow, but Ed's white count is 16.4, which is higher than the normal range, indicating an infection of some sort. He's had a couple of fevers today around 101.3 and 101.7, but the Tylenol does knock 'em down, so we'll wait and see what tomorrow brings. Ed has a CT scan tomorrow morning and then we'll see Dr. Menco on Wednesday morning to discuss the findings. Keep your fingers crossed for good news.
Ed made it about 3/4 of the way through the Factor tonight.....watching on the patio TV before he dozed off, so I made him come inside and lay down instead of going for the walk we had planned for later. I think being up and outside all day wore him out. Tomorrow we'll shoot for a stroll down to the end of the block.
Keep good thoughts - we feel them coming our way all of the time and we are grateful for the love and prayers.
Glenn Nelson came by this afternoon and our neighbor Craig Fletcher viisted too. I think Ed was grateful for the opportunity for some guy talk - he's been stuck with me and a bunch of nurses (mostly female but not all) for quite a while now... not that Ed is normally the kind of guy who minds being "stuck" with a bunch of women, nurses or otherwise.....it's just usually under different circumstances!
Dr. Mazur is still waiting for some blood and urine cultures which won't be in until tomorrow, but Ed's white count is 16.4, which is higher than the normal range, indicating an infection of some sort. He's had a couple of fevers today around 101.3 and 101.7, but the Tylenol does knock 'em down, so we'll wait and see what tomorrow brings. Ed has a CT scan tomorrow morning and then we'll see Dr. Menco on Wednesday morning to discuss the findings. Keep your fingers crossed for good news.
Ed made it about 3/4 of the way through the Factor tonight.....watching on the patio TV before he dozed off, so I made him come inside and lay down instead of going for the walk we had planned for later. I think being up and outside all day wore him out. Tomorrow we'll shoot for a stroll down to the end of the block.
Keep good thoughts - we feel them coming our way all of the time and we are grateful for the love and prayers.
Sunday, April 3, 2011
8:30 PM Sunday April 3, 2011
Well, we made it through the weekend, at home and safe and sound. We had the little scare last night, but I guess we're probably both just a little sensitive after last week. The fevers are worrisome, but I guess expected with the amount of infection he had. I didn't realize it, but Ed will be on IV antibiotics at home 3 times a day for six weeks! Lisa came and took the necessary blood and urine samples this morning and we'll have results tomorrow from Dr. Mazur. If he needs to adjust or add an antibiotic, that's what we'll do. We had a quiet day - Ed's Mom came over this afternoon and visited. I cooked again today - corn & smoked sausage chowder and biscuits, Lou brought a coconut creame pie over and we had a nice family dinner - Ryan, Lou, Tyler and Ed and I. (Ed just watched, as his digestive tract is still not ready for food, as we found out last weekend.) He slept a lot today since we didn't sleep much last night - hopefully tonight we'll get some better rest.
Ed will get a CT scan either tomorrow or Tuesday and we're hoping for excellent news on the lymphoma front. With any luck, they may also be able to see what's going on with the telescoping of the small intestine and whether or not that's getting better. Sometimes they can't see it very well.
Thanks for the great framed photo, Tom & Debbie! It was a lovely wedding gift - a pic of us at the lake on one of our many fun times. And Ginny & Per - the CD books and puzzles for Ed will definately help pass the time while he's resting and recouperating - very thoughtful. I also got to see the fabulous book that Melia and Joann & Kevin put together from the motorcycle "love ride" for Ed a couple of weeks ago. It's a cool hard-bound book, filled with lots of photos of our riding friends, and we've really enjoyed looking at it. What a labor of love! Thank you from Ed's heart. We can't wait until we can join you all again at Deer Lodge on a beautiful Sunday afternoon. THAT will be something to celebrate!
I'm going to log off and hit the hay. We have one round of meds that needs to happen during the night around 3:30 AM, so we'll try and get a few hours of solid rest before then.
Talk to you tomorrow.
Ed will get a CT scan either tomorrow or Tuesday and we're hoping for excellent news on the lymphoma front. With any luck, they may also be able to see what's going on with the telescoping of the small intestine and whether or not that's getting better. Sometimes they can't see it very well.
Thanks for the great framed photo, Tom & Debbie! It was a lovely wedding gift - a pic of us at the lake on one of our many fun times. And Ginny & Per - the CD books and puzzles for Ed will definately help pass the time while he's resting and recouperating - very thoughtful. I also got to see the fabulous book that Melia and Joann & Kevin put together from the motorcycle "love ride" for Ed a couple of weeks ago. It's a cool hard-bound book, filled with lots of photos of our riding friends, and we've really enjoyed looking at it. What a labor of love! Thank you from Ed's heart. We can't wait until we can join you all again at Deer Lodge on a beautiful Sunday afternoon. THAT will be something to celebrate!
I'm going to log off and hit the hay. We have one round of meds that needs to happen during the night around 3:30 AM, so we'll try and get a few hours of solid rest before then.
Talk to you tomorrow.
8:15 AM Sunday, April 3, 2011
Happy Sunday! It's a little overcast outside here in Thousand Oaks, but the view from the windows at home is preferable to the view from a hospital room no matter what the weather! Just to putter around in my robe with a cup of coffee (Almond Joy creamer in it today) is an ahhhhh moment.
Gave Ed all his morning meds and his IV antibiotic, so he'll continue to doze for a little bit until the TPN is finished around 10:30. I'm watching the food channel and looking at cookbooks to decide what to make for dinner today - Ed's mom is coming over later and she'll have dinner with me, so it will be nice to cook for her.
We had a bit of a sleepless night - Ed got a low-grade fever a couple of times - 99.7 and 100.5 but the Tylenol knocked it down. He also has some testicular pain and swelling, so I called Lisa, our home health care nurse, and she answered the phone at 2:30 AM and helped me. It's so much easier staying at home knowing that she's only a phone call away! We just spoke again and she's going to get in touch with Dr. Mazur's office and let them know what's going on to see whether we need to go have anything checked out today.
9:25: Lisa just called and Dr. Mazur wants her to come by and draw blood and get a urine sample to culture this morning so Lisa will be here in less than an hour. I better jump in the shower.......and off the blog. I'll update later.
Gave Ed all his morning meds and his IV antibiotic, so he'll continue to doze for a little bit until the TPN is finished around 10:30. I'm watching the food channel and looking at cookbooks to decide what to make for dinner today - Ed's mom is coming over later and she'll have dinner with me, so it will be nice to cook for her.
We had a bit of a sleepless night - Ed got a low-grade fever a couple of times - 99.7 and 100.5 but the Tylenol knocked it down. He also has some testicular pain and swelling, so I called Lisa, our home health care nurse, and she answered the phone at 2:30 AM and helped me. It's so much easier staying at home knowing that she's only a phone call away! We just spoke again and she's going to get in touch with Dr. Mazur's office and let them know what's going on to see whether we need to go have anything checked out today.
9:25: Lisa just called and Dr. Mazur wants her to come by and draw blood and get a urine sample to culture this morning so Lisa will be here in less than an hour. I better jump in the shower.......and off the blog. I'll update later.
Saturday, April 2, 2011
Saturday, April 2, 2011
What a change of pace! We got home around 6:30 last night and Lisa Teevan, our home health care nurse, came by and reviewed all the meds (8 of them!) plus the TPN and it's supplements and additives that go in fresh each day - a little like making a meal in a bag for Ed. Went to the pharmacy at 8:30 PM and got the prescriptions refilled along with the Tegaderm dressings that lets him shower and keep the port incision drainage tubes and PICC line dry. It would be a shame to pass up taking advantage of the beautiful new tumbled marble tile shower in the new bathroom. It's also a steam shower, so there's a bench in the shower that he can sit on and use the hand-held unit so it's very relaxing.
Ed had a bit of a rough night - he didn't feel very well, but his temp stayed at 99.3 all night. Lisa explained that his fluids are shifting with the change from full time PPN to 14-hour compressed TPN at home, along with the switch from IV meds to oral and sublingual meds at home. He had pretty bad night sweats - but it felt good to sleep in a regular bed! Things settled down for him around 4 AM so we slept until about 9. He feels better this morning and Robert Winter is here visiting for a bit before he leaves to go to the airport to return to Oregon later this afternoon.
Our friends Craig and Katie had a new baby girl on Thursday at Los Robles - little Ashlyn joins her 23-month old sister Bryn and the whole family is doing well. Congrats to you - sorry we weren't able to come by a visit in the hospital yesterday - it's always such a whirlwind getting everything set up and organized to home. We hope to see you and your new little one soon.
Ed has a busy week ahead - he will have a CT scan on Monday or Tuesday, see Dr.. Menco on Wednesday and Dr. Mazur on Friday. Then we will have some information about what's next for the chemo schedule. I really hope he'll have a week of peace and quiet at home before the next round. Last night we just sat for a while in the chair with the doors open (it was 75 degrees out!) and mostly enjoyed the SILENCE! All we could hear was the sound of the birds in the yard. You forget what quiet sounds like after being in the hospital for a while - all the machinery, people, pumps, activity in the hallways, etc. The silence was almost deafening by comparison!
Ed has gone for a ride with Robert Winters (to whom I gave STRICT instructions before they left) and I'm baking oatmeal raisin cookies from my grandmother's recipe. It's a little dreary out and a fog layer has enveloped the ravine behind our home, but no rain. It's a perfect baking, puttering in the kitchen kind of day and that's exactly what I intend to do.
Call us if you'd like to visit now - his whites are up to 3.8 so he can have company as long as no one is sick and we just have the extra precautions of vigorous hand washing, keeping distance and avoiding direct contact. He gets tired pretty easily, so we'll just go day by day.
Gotta run and take my cookies out of the oven.........
Ed had a bit of a rough night - he didn't feel very well, but his temp stayed at 99.3 all night. Lisa explained that his fluids are shifting with the change from full time PPN to 14-hour compressed TPN at home, along with the switch from IV meds to oral and sublingual meds at home. He had pretty bad night sweats - but it felt good to sleep in a regular bed! Things settled down for him around 4 AM so we slept until about 9. He feels better this morning and Robert Winter is here visiting for a bit before he leaves to go to the airport to return to Oregon later this afternoon.
Our friends Craig and Katie had a new baby girl on Thursday at Los Robles - little Ashlyn joins her 23-month old sister Bryn and the whole family is doing well. Congrats to you - sorry we weren't able to come by a visit in the hospital yesterday - it's always such a whirlwind getting everything set up and organized to home. We hope to see you and your new little one soon.
Ed has a busy week ahead - he will have a CT scan on Monday or Tuesday, see Dr.. Menco on Wednesday and Dr. Mazur on Friday. Then we will have some information about what's next for the chemo schedule. I really hope he'll have a week of peace and quiet at home before the next round. Last night we just sat for a while in the chair with the doors open (it was 75 degrees out!) and mostly enjoyed the SILENCE! All we could hear was the sound of the birds in the yard. You forget what quiet sounds like after being in the hospital for a while - all the machinery, people, pumps, activity in the hallways, etc. The silence was almost deafening by comparison!
Ed has gone for a ride with Robert Winters (to whom I gave STRICT instructions before they left) and I'm baking oatmeal raisin cookies from my grandmother's recipe. It's a little dreary out and a fog layer has enveloped the ravine behind our home, but no rain. It's a perfect baking, puttering in the kitchen kind of day and that's exactly what I intend to do.
Call us if you'd like to visit now - his whites are up to 3.8 so he can have company as long as no one is sick and we just have the extra precautions of vigorous hand washing, keeping distance and avoiding direct contact. He gets tired pretty easily, so we'll just go day by day.
Gotta run and take my cookies out of the oven.........
Friday, April 1, 2011
2:30 PM Friday, April 1, 2011
Ed is going home today! NOT an April Fool's joke!!!!! They are arranging all the home health care for the IV antibiotics, TPN, etc. and I'm going to jump off and get packing.
More later. I'll let you all know how he's doing later tonight after everything gets settled. He's very anxious to get home and I have a LOT to do to get it organized. (I wish they would be more organized about decision making on a Friday afternoon, but that's how it goes.)
More later. I'll let you all know how he's doing later tonight after everything gets settled. He's very anxious to get home and I have a LOT to do to get it organized. (I wish they would be more organized about decision making on a Friday afternoon, but that's how it goes.)
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