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.
Wednesday, April 20, 2011
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.
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