The stem cell transplant is almost complete......Ed had the 6 bags today with no problems, just a strange odor that we agreed smelled like very ripe tomato juice with garlic in it. That's exactly what it looked like too. The lab nurse came in with a big silver canister on a handtruck that contained metal sleeves with the frozen bags inside. They were very flat, like a DVD jacket box. When she opened the canister, the plumbes of vapor from the frozen core spilled out, just like in a sci-fi movie or something. Very odd odor, but not overwhelming or anything. The whole process took a little over an hour! Like I said, very underwhelming in terms of the complexity of the actual procedure, but the science behind it is incredible and we're so grateful for the opportunity to utilize it in Ed's fight.
The nursing staff brought in a cake and sang Happy Birthday to Ed afterward.......they used a mint swab sponge as a "candle" and Ed ate a small piece of cake to celebrate. (The cake wasn't terribly tasty because it was a frozen cake for the low-bacteria diet he's on, but the sentiment was wonderful. He'll have plenty of time to eat delicious cake in a few weeks.) Now we continue to wait for the cells to find their way back to the bone marrow, engraft and begin to multiply. The doctor said that 8 days is the shortest amount of time it's taken for any patient they've had, but the average is more like 12-15 days. Even though they expect that period to be the roughest, Ed still feels pretty darn good for what he's going through. He slept quite a bit today and hasn't felt like doing much of anything, even watching TV, but I just talked to him and he IS watching Bill O'Reilly. Imagine that. (I just drove back to the office late today to get payroll ready for tomorrow, so now I can breathe easier knowing he's not missing his show.)
So, everything went welll today and I just wanted to let you all know that the transpslant has taken place. I know you will continue to keep him in your prayers and thoughts, and we appreciate that very much. Until tomorrow.......
Thursday, June 30, 2011
10 AM Thursday, June 20th, 2011
Good morning and Happy Stem Cell Day! The nurse just came in and said everything is a go for the transplant today. They have 7 bags of cells and the maximum they can infuse in a day is 6, so he'll get the six today and one more tomorrow. They will probably start later this morning.
Ed's white counts have dropped a little more today, but his reds are up after the transfusions yesterday, as expected. He's feeling pretty tired this morning, even though he slept well last night. He's resting now and we're waiting for breakfast to arrive so he can eat a little before they start. The infusions are similar to having platelets, except that a lab tech has to bring a kind of hydroculator (warm water bath contraption) into the room to gently thaw the frozen cells before they hang the bag to be gravity-fed into the tubing. The cells have been frozen in a preservative that has a very garlicky smell when thawed from what they are telling us - something called DMSO. That's about the most exciting part of the procedure apparently - the smell of an Italian kitchen......it's really kind of uneventful for its name. The nurses will give him a cake and sing happy birthday though. They tell us that many people consider this a new beginning since in essence, they've "killed" everything inside and you are starting out with a brand new immune system.
I'll update later and let you know how it all went. The nurse just came in to give him the pre-meds, which means they will start in 30-45 minutes, so I'll close and make sure Ed's gets his breakfast! Have a great day.
Ed's white counts have dropped a little more today, but his reds are up after the transfusions yesterday, as expected. He's feeling pretty tired this morning, even though he slept well last night. He's resting now and we're waiting for breakfast to arrive so he can eat a little before they start. The infusions are similar to having platelets, except that a lab tech has to bring a kind of hydroculator (warm water bath contraption) into the room to gently thaw the frozen cells before they hang the bag to be gravity-fed into the tubing. The cells have been frozen in a preservative that has a very garlicky smell when thawed from what they are telling us - something called DMSO. That's about the most exciting part of the procedure apparently - the smell of an Italian kitchen......it's really kind of uneventful for its name. The nurses will give him a cake and sing happy birthday though. They tell us that many people consider this a new beginning since in essence, they've "killed" everything inside and you are starting out with a brand new immune system.
I'll update later and let you know how it all went. The nurse just came in to give him the pre-meds, which means they will start in 30-45 minutes, so I'll close and make sure Ed's gets his breakfast! Have a great day.
10 PM Wednesday June 29, 2011
Just a quick update before we call it a night. Ed had a good day today just resting and getting a couple of units of blood. He feels a little more energetic after the transfusions. I personally think we'd all feel a lot better if we could check into a hosptial once a month and get a couple of units of blood and some IV fluids and rest, but my insurance company has other ideas about how I should take care of myself. Oh well.
We've been watchin "The Voice" and "America's Got Talent" tonight. Ed has decided that once he leaves the hospital he will be able to start a new career as a "hospital patient stand-in". He's getting pretty good at this patient stuff and could fill in for anybody in the hospital who just wants a couple of hours break.....
Everything is going along as the doctors expect. Tomorrow is the big day, so I'll update the blog after they transfuse the stem cells and let you know how that is going.
We've been watchin "The Voice" and "America's Got Talent" tonight. Ed has decided that once he leaves the hospital he will be able to start a new career as a "hospital patient stand-in". He's getting pretty good at this patient stuff and could fill in for anybody in the hospital who just wants a couple of hours break.....
Everything is going along as the doctors expect. Tomorrow is the big day, so I'll update the blog after they transfuse the stem cells and let you know how that is going.
Wednesday, June 29, 2011
11 PM Tuesday, June 28, 2011
Whewhooo! The chemo is finally OVER. Ed had his last dose today and that feels really monumental. He's still feeling pretty good, considering the toxic cocktail he's endured for the past week. Now he can have a day of rest and flushing out the chemicals to get all cleaned up for the transplant on Thursday. His counts stayed pretty level today with only a slight drop in his white count since yesterday, so he didn't need a transfusion after all. So far, so good.
We've been watching "The Voice" most of the evening, Ed took a bath (can't shower with the perma-cath), the nurse is changing the sheets on his bed, and soon it's time for some shut-eye. Since he won't be getting chemo during the night now, I'm hoping he'll be able to sleep better and not be interrupted so much. Actually, that goes for both of us...... a couple of days ago, there was a woman out on the 4th floor psychiatric patio, who for no apparent reason, had her head partially wrapped in aluminum foil (perhaps some sort of misguided fashion experiment or maybe protective headwear intended to thwart an alien brain snaatching attempt - I can't be sure which, but as my daughter so wisely pointed out, without enough sleep and self-care, I could end up on that patio with aluminum foil wrapped around MY head as well. She said its probably a good reminder to look down there and remember that from time to time. I think she's right. So I'll say goodnight and log off for tonight.
Tomorrow I'm visiting a school that my youngest daughter wants to attend, but I'll update the blog at some point and let you know how Ed's doing. Thanks for your messages, comments and calls. It helps break up the monotony for Ed. Good night.
We've been watching "The Voice" most of the evening, Ed took a bath (can't shower with the perma-cath), the nurse is changing the sheets on his bed, and soon it's time for some shut-eye. Since he won't be getting chemo during the night now, I'm hoping he'll be able to sleep better and not be interrupted so much. Actually, that goes for both of us...... a couple of days ago, there was a woman out on the 4th floor psychiatric patio, who for no apparent reason, had her head partially wrapped in aluminum foil (perhaps some sort of misguided fashion experiment or maybe protective headwear intended to thwart an alien brain snaatching attempt - I can't be sure which, but as my daughter so wisely pointed out, without enough sleep and self-care, I could end up on that patio with aluminum foil wrapped around MY head as well. She said its probably a good reminder to look down there and remember that from time to time. I think she's right. So I'll say goodnight and log off for tonight.
Tomorrow I'm visiting a school that my youngest daughter wants to attend, but I'll update the blog at some point and let you know how Ed's doing. Thanks for your messages, comments and calls. It helps break up the monotony for Ed. Good night.
Monday, June 27, 2011
Noon Monday, June 27th, 2011
Okay. (I just took a deep breath.) We're still doing well with the waiting game so far.....Ed had a pretty quiet rest of the day Sunday and is still feeling reasonably okay, considering all the chemo and medications he has had the past 4 days. I walked around Westwood for a little bit yesterday afternoon to scout out the area, get a little fresh air and sunshine and pick up some goodies at Trader Joe's. We read the Sunday paper, looked at maps to plan some future motorcycle ride routes, and watched a couple of sci-fi movies. We also discovered that Ed's room overlooks the outdoor patio of the psychiatric ward 2 floors below, so there was some interesting activity to observe occasionally throughout the day just to change things up a bit. We had a lovely nurse named Kathy yesterday who also gave me a very thorough class in the care and maintenance of the perma-cath in Ed's chest. They will leave it in when he's discharged since he will probably continue to need transfusions and they can use it to draw blood so he doesn't have to be such a pincushion. Just your average Sunday afternoon........
Today Ed is having doses 7 and 8 of the ARA-C and etoposide, which are the last two doses of those drugs. Tomorrow he will get melphalan (another chemo drug) and then he's REALLY done with chemotherapy! YEAH!! Wednesday will be a welcome day of rest and flushing out as much chemo as possible. His counts have started dropping as expected but they haven't crashed, so he's still feeling pretty much the same as the past couple of days - "generally just sort of crummy with occasional waves of more crummy" which is a direct quote. Overall, the doctors are pleased that he's still eating and getting up to walk the halls, and able to take a bath each day (no showers allowed). His red count is nearing the threshhold for a transfusion, but its expected and doesn't cause him any pain, he just feels more tired and lethargic. Lots of cat-napping for this guy who usually has life's tiger by the tail.....
Not much else to tell right now. The days are long for him for all of the obvious reasons, but he's doing a good job of being a patient patient, which we all know is challenging for him, especially with the sunshine and all of his summer toys beckoning. For the moment, feel free to call Ed if you'd like. He knows you'll understand if he doesn't answer when he's resting or doesn't feel up to chatting. Or send a "thinking of you" text.....I know sometimes its hard to have the right words to say in a call. He appreciates it all and understands too.
We're entering the "hunker-down" days for sure and I'll do my best to keep the blog updated. I know you are all pulling for his recovery to be swift and steady and you all want to know what's going on. Thank you so much.
Liz
Today Ed is having doses 7 and 8 of the ARA-C and etoposide, which are the last two doses of those drugs. Tomorrow he will get melphalan (another chemo drug) and then he's REALLY done with chemotherapy! YEAH!! Wednesday will be a welcome day of rest and flushing out as much chemo as possible. His counts have started dropping as expected but they haven't crashed, so he's still feeling pretty much the same as the past couple of days - "generally just sort of crummy with occasional waves of more crummy" which is a direct quote. Overall, the doctors are pleased that he's still eating and getting up to walk the halls, and able to take a bath each day (no showers allowed). His red count is nearing the threshhold for a transfusion, but its expected and doesn't cause him any pain, he just feels more tired and lethargic. Lots of cat-napping for this guy who usually has life's tiger by the tail.....
Not much else to tell right now. The days are long for him for all of the obvious reasons, but he's doing a good job of being a patient patient, which we all know is challenging for him, especially with the sunshine and all of his summer toys beckoning. For the moment, feel free to call Ed if you'd like. He knows you'll understand if he doesn't answer when he's resting or doesn't feel up to chatting. Or send a "thinking of you" text.....I know sometimes its hard to have the right words to say in a call. He appreciates it all and understands too.
We're entering the "hunker-down" days for sure and I'll do my best to keep the blog updated. I know you are all pulling for his recovery to be swift and steady and you all want to know what's going on. Thank you so much.
Liz
Sunday, June 26, 2011
10 AM Sunday, June 26, 2011
Happy Sunday morning! All is going well here at UCLA..... Ed is tolerating the chemo really well so far...no real acute side effects so far -- just a little loss of appetite and general tiredness, but they've been doing a good job of keeping the nausea and other discomforts at bay. He's on so many meds right now that for the first time since this ordeal started, I actually have to look at a piece of paper to name them all. I guess my memory threshhold for that stuff is around a dozen and he's over that for sure. Some will stop when the chemo ends Tuesday night or Wednesday morning, but I guess there are others that will come into play post-transplant. His counts are starting to fluctuate more dramatically, which is a sign the chemo is working, but also brings some anxiety -- like waiting for the other shoe to drop, so to speak. His white count is still in the "normal" range - 4.4 today after being at 9.2 yesterday after being at 59.5 last week during the collection, but they are giving us the results of the "differential" blood tests now, which measures the different types of whites, which is important. I guess they're looking at the neutrophil count (the "marines" of the white cell types) and will be monitoring that closely after the transplant. The count for those has to come to point five before he can be discharged to Tiverton House. His reds are dropping and he's on the borderline for a blood transfusion, but that's expected and common and he'll probably get quite a few transfusions before the process is complete.
An amusing medication story.....Not sure why, but some of the meds require that the nurse actually WATCHES Ed swallow the pills (seems a little like "One Flew Over the Cuckoo's Nest " to me, but I'm sure they have a reason). On Friday night we were watching a movie and eating Good and Plenty candy. I guess one fell on the floor. After the shift change, a nurse came in and saw the candy on the floor and thought it was a missed medication. Ed and I were both sleeping so she didn't want to wake us up to ask about it, so she took it and started examining it and trying to look for manufacturer identification, etc. She showed it to several other nurses and a brief investigation began before one remembered seeing the candy box on the bookshelf and they realized what it was. They all thought it was hilarious. Guess you had to be there. I don't think the opportunity for humor is very frequent on this floor, so every opportunity is a blessing.
The staff is all very nice but we'd sure like to be back in Thousand Oaks. Ed can't leave the floor here so he's pretty bored, especially when he's not feeling so sick that he would normally be laying around. At Los Robles, he was much freer to stroll around the hospital and sit outside on a patio so he could get some fresh air. Perhaps the lesson here is patience, but what a tough teacher!! This experience is either going to make Ed add patience and serenity to his list of life skills, or push the speed at which he pursues life into super-nova hyperdrive.......the jury is still out on that. For the moment, he's content watching a re-run of "Gidget" while I struggle through my giant book of medium to difficult sudoku puzzles.
They just started another round of chemo, so he'll sleep for a while (the pre-meds for each chemo round make him very drowsy). I'm going to run out and get a Sunday paper and some goodies for when he wakes up. No matter how much his appetite has waned, I can usually get him to eat a jelly donut or some cookies and milk, so I'm scouting out the local bakeries. There is so much within walking distance - good for getting a little exercise too. Thanks for the "recommendations" Tom (even though none of them provide "to go" items approved by the hospital, or by ME for that matter), and for the mirror/slipper tip, Lee -- I have confiscated all adhesives in the room. It's comforting (yet mildly disturbing as well) to know that some things just never change! :)
The schedule is still for chemo to be over Tuesday night or early Wednesday morning, with Wednesday being a "rest" day with lots of fluids to flush out the chemo. Thursday is the transplant day! I'll keep you posted about progress.
Thanks for all the thoughts and prayers and energy being sent our way. It makes a big difference to have such an amazingly wide circle of love and positive energy. I hope you are each thinking about your own health and family and friends as well and doing something joyful. It pays forward.......
Blessings of the day,
Liz
An amusing medication story.....Not sure why, but some of the meds require that the nurse actually WATCHES Ed swallow the pills (seems a little like "One Flew Over the Cuckoo's Nest " to me, but I'm sure they have a reason). On Friday night we were watching a movie and eating Good and Plenty candy. I guess one fell on the floor. After the shift change, a nurse came in and saw the candy on the floor and thought it was a missed medication. Ed and I were both sleeping so she didn't want to wake us up to ask about it, so she took it and started examining it and trying to look for manufacturer identification, etc. She showed it to several other nurses and a brief investigation began before one remembered seeing the candy box on the bookshelf and they realized what it was. They all thought it was hilarious. Guess you had to be there. I don't think the opportunity for humor is very frequent on this floor, so every opportunity is a blessing.
The staff is all very nice but we'd sure like to be back in Thousand Oaks. Ed can't leave the floor here so he's pretty bored, especially when he's not feeling so sick that he would normally be laying around. At Los Robles, he was much freer to stroll around the hospital and sit outside on a patio so he could get some fresh air. Perhaps the lesson here is patience, but what a tough teacher!! This experience is either going to make Ed add patience and serenity to his list of life skills, or push the speed at which he pursues life into super-nova hyperdrive.......the jury is still out on that. For the moment, he's content watching a re-run of "Gidget" while I struggle through my giant book of medium to difficult sudoku puzzles.
They just started another round of chemo, so he'll sleep for a while (the pre-meds for each chemo round make him very drowsy). I'm going to run out and get a Sunday paper and some goodies for when he wakes up. No matter how much his appetite has waned, I can usually get him to eat a jelly donut or some cookies and milk, so I'm scouting out the local bakeries. There is so much within walking distance - good for getting a little exercise too. Thanks for the "recommendations" Tom (even though none of them provide "to go" items approved by the hospital, or by ME for that matter), and for the mirror/slipper tip, Lee -- I have confiscated all adhesives in the room. It's comforting (yet mildly disturbing as well) to know that some things just never change! :)
The schedule is still for chemo to be over Tuesday night or early Wednesday morning, with Wednesday being a "rest" day with lots of fluids to flush out the chemo. Thursday is the transplant day! I'll keep you posted about progress.
Thanks for all the thoughts and prayers and energy being sent our way. It makes a big difference to have such an amazingly wide circle of love and positive energy. I hope you are each thinking about your own health and family and friends as well and doing something joyful. It pays forward.......
Blessings of the day,
Liz
Friday, June 24, 2011
6 PM Friday, June 24th, 2011
Just talked to Ed (I'm still at the office but leaving shortly). He had his first doses of etoposide and ARA-C today and so far he's still feeling pretty good. A little stomach upset, but nothing drastic. He's been watching TV most of the day and sleeping when he can. He ate a good breakfast and lunch and is contemplating the dinner menu. I'm going to wait until traffic thins out and drive down later tonight or first thing in the morning, depending on much I get done when I get home.
Ed's room is on the 6th floor of the building and UCLA is just a bee-hive of bustling activity during the day, so I'm taking Ed a pair of binoculars so he can entertain himself a little. There's a couch right in front of the window in the room, so I thought he might like to sit there and get a "birds-eye" (or bird-dog's eye) view of what's going on. Hopefully these foggy days will give way to some beautiful sunrises and sunsets soon. We have a view in the direction of the ocean, even though we can't see the water.
His counts are still relatively good today so he's not feeling too tired yet or anything. Hopefully he'll have at least a couple of more days before these big chemo doses kick in and knock down his blood counts. That always makes him feel so tired and uncomfortable. That's when the real battle begins and we're not looking forward to it. I'll scout out the area around the hospital this weekend while the streets aren't packed with people in white coats........hoping to find some interesting little neighborhood places that we'll be able to visit when he's discharged to Tiverton House. Wish me luck and let me know if you have a favorite place in the area that you think Ed will enjoy.......
Have a happy, joy-filled weekend with some outdoor time and fresh air!
Ed's room is on the 6th floor of the building and UCLA is just a bee-hive of bustling activity during the day, so I'm taking Ed a pair of binoculars so he can entertain himself a little. There's a couch right in front of the window in the room, so I thought he might like to sit there and get a "birds-eye" (or bird-dog's eye) view of what's going on. Hopefully these foggy days will give way to some beautiful sunrises and sunsets soon. We have a view in the direction of the ocean, even though we can't see the water.
His counts are still relatively good today so he's not feeling too tired yet or anything. Hopefully he'll have at least a couple of more days before these big chemo doses kick in and knock down his blood counts. That always makes him feel so tired and uncomfortable. That's when the real battle begins and we're not looking forward to it. I'll scout out the area around the hospital this weekend while the streets aren't packed with people in white coats........hoping to find some interesting little neighborhood places that we'll be able to visit when he's discharged to Tiverton House. Wish me luck and let me know if you have a favorite place in the area that you think Ed will enjoy.......
Have a happy, joy-filled weekend with some outdoor time and fresh air!
8 AM Friday, June 24th, 2011
We are settled at UCLA in Room 6151 with a nice view toward the ocean (although the fog has been pervasive since we arrived). Wednesday was a relatively quiet afternoon and evening - just lots of getting settled, lab work, paperwork, questions and introductions and explanations. We had a "regular" menu dinner - Ed had pizza which he liked, so now we know he'll have at least one thing to eat, since that pizza is also on the "low bacteria" diet which he is now on. They switched him to the low bacteria diet yesterday after they started the first chemo infusion - just 3 hours long - a drug called carmustine (BCNU). Ed tolerated the infusion really well. He didn't get the often-reported headache and nausea that go with this chemical - and they are really giving him quite a number of medications to prevent these reactions and keep him comfortable. Thank goodness - the boredom and confinement alone is enough to deal with -- when this is all over we've both taken a solemn vow NEVER to watch back-to-back episodes of "Swamp People" just because it's the best thing on TV at the time! I know more about 'gator huntin' than anyone living outside the bayou needs to know. Usually I'm okay with learning quirky stuff cause it often comes in handy during the random Jeopardy category, but I'm pretty sure this subject will never come up!
Ed had a good breakfast - french toast, corn flakes, scrambled eggs and canned peaches - I'm glad he's still got a good appetite and eating. That single factor is making such a big difference the past several weeks and he's up to 150 pounds, which is a far sight from the 129 he hovered at during the worst of it. He says that food still doesn't taste the same and he feels differently when he eats than ever before, but hopefully it will all become familiar and pleasant again in a few months.
I'm in the office this morning or payroll and end-of-the-week wrap-up. They will be starting the second type of chemo today, which is the ARA-C with etoposide. These are the strong chemos that Ed had some tough reactions to before. They need to increase the dose by about 7 times and infuse it for the next 5 days, so we're gonna hunker down and take all the meds they can offer to minimize the side-effects. These 5 days are the big guns to wipe out everything left in his body to clean everything up for the collected stem cells to have a nice healthy new home in which to engraft. They are giving him gut-cleaners to strip the bacteria from his intestinal tract as well, so everything will be as clean as possible. We don't quite know what to expect, but we'll just go day by day. Starting today, we're moving into high alert for infectious/contagious germ control, wearing masks, lots of hand washing and he's got all kinds of antibiotic & anti-fungal meds, anti-fungal powder for his body, mouth rinses, etc. He has also agreed to participate in a clinicl trial for a vaccine to prevent shingles in post-transplant patients (which happens quite frequently from what we understand). 2/3 of the participants will get the actual vaccine and 1/3 will get a placebo - we won't know which group Ed is in because it's an FDA "blind" study. We're hoping for the vaccine - shingles can be an extremely painful condition and very debilitating. I would hate for him to have to go through that. Those injections begin this week as well, so there will be lots going on now. We've decided that the pop-culture i-phone catch phrase "There's an app for that...." translates into "There's a pill for that...." in the hospital setting. Seems like any minor thing we mention in terms of a symptom results in more pills being ordered. It's crazy, but apparently effective. Finally, I can put that advanced Excel spreadsheet class to good use! Maybe in my quiet time I can do bar graphs and bubble charts of medications. Nah.....I'd rather be watching Swamp People........
So that's the update for today. Late last night I got the access information to set up my laptop and break the UCLA shroud of privacy that controls the internet access around the campus, so I'll be able to log on this weekend and keep you updated of his progress. Thank you so much for the prayers and thoughts. Feel free to send messages and if you can't get on the blog to leave 'em, feel free to e-mail me at liz@lloydsplumbing.net and I will certainly pass on the messages. You can mail cards to the house and my kids and I will make sure the mail flow doesn't bottleneck. Unfortunately, flowers or plants are not allowed for a while - they try to keep a minimum amount of "outside" articles from entering the room once his counts start to drop.
I'll be back later to let you know how he's doing. Love to you all!
Liz
Ed had a good breakfast - french toast, corn flakes, scrambled eggs and canned peaches - I'm glad he's still got a good appetite and eating. That single factor is making such a big difference the past several weeks and he's up to 150 pounds, which is a far sight from the 129 he hovered at during the worst of it. He says that food still doesn't taste the same and he feels differently when he eats than ever before, but hopefully it will all become familiar and pleasant again in a few months.
I'm in the office this morning or payroll and end-of-the-week wrap-up. They will be starting the second type of chemo today, which is the ARA-C with etoposide. These are the strong chemos that Ed had some tough reactions to before. They need to increase the dose by about 7 times and infuse it for the next 5 days, so we're gonna hunker down and take all the meds they can offer to minimize the side-effects. These 5 days are the big guns to wipe out everything left in his body to clean everything up for the collected stem cells to have a nice healthy new home in which to engraft. They are giving him gut-cleaners to strip the bacteria from his intestinal tract as well, so everything will be as clean as possible. We don't quite know what to expect, but we'll just go day by day. Starting today, we're moving into high alert for infectious/contagious germ control, wearing masks, lots of hand washing and he's got all kinds of antibiotic & anti-fungal meds, anti-fungal powder for his body, mouth rinses, etc. He has also agreed to participate in a clinicl trial for a vaccine to prevent shingles in post-transplant patients (which happens quite frequently from what we understand). 2/3 of the participants will get the actual vaccine and 1/3 will get a placebo - we won't know which group Ed is in because it's an FDA "blind" study. We're hoping for the vaccine - shingles can be an extremely painful condition and very debilitating. I would hate for him to have to go through that. Those injections begin this week as well, so there will be lots going on now. We've decided that the pop-culture i-phone catch phrase "There's an app for that...." translates into "There's a pill for that...." in the hospital setting. Seems like any minor thing we mention in terms of a symptom results in more pills being ordered. It's crazy, but apparently effective. Finally, I can put that advanced Excel spreadsheet class to good use! Maybe in my quiet time I can do bar graphs and bubble charts of medications. Nah.....I'd rather be watching Swamp People........
So that's the update for today. Late last night I got the access information to set up my laptop and break the UCLA shroud of privacy that controls the internet access around the campus, so I'll be able to log on this weekend and keep you updated of his progress. Thank you so much for the prayers and thoughts. Feel free to send messages and if you can't get on the blog to leave 'em, feel free to e-mail me at liz@lloydsplumbing.net and I will certainly pass on the messages. You can mail cards to the house and my kids and I will make sure the mail flow doesn't bottleneck. Unfortunately, flowers or plants are not allowed for a while - they try to keep a minimum amount of "outside" articles from entering the room once his counts start to drop.
I'll be back later to let you know how he's doing. Love to you all!
Liz
Tuesday, June 21, 2011
4 PM Tuesday June 21, 2011
Good things come to those who wait.....and these good things are teeny tiny microscopic stem cells......890,000 of them collected today! Quite a jump from the previous days of 3 to 4 hundred thousand a day. So Ed is all done with stem cell collection - there are 2,350,000 of them waiting for him for next week's infusion.
Right now we're waiting for a bed to become available on the stem cell unit, which will likely be tomorrow (they expect to discharge 2 patients by Wednesday afternoon). We will call around noon tomorrow to get the final word and then off we go. Ed will have a full day of fluid hydration and plenty of time for FOX News and all the breaking stories while we get settled in. I will likely be getting reacquainted and making sure everything is set up to make him as comfortable as possible and figuring out the shortest route to the best pizza place and ice cream shop within walking distance. I hope he'll be feeling up to lots of pizza and ice cream for at least a few days.
That's the awesome news for now........ we're off to see Ed's Mom and then catch a movie tonight -- we won't have much chance for a "date night" OUT for a bit, so we'll take advantage of our chance to see "Super 8" later this evening. Oh..... no more Neupogen shots for now too! What a relief! Ed's stomach is an unofficial pin cushion and I'm sure he'll be happy for the break.
As soon as we get settled and know what we're doing tomorrow, I'll update you....... Happy Tuesday!
Right now we're waiting for a bed to become available on the stem cell unit, which will likely be tomorrow (they expect to discharge 2 patients by Wednesday afternoon). We will call around noon tomorrow to get the final word and then off we go. Ed will have a full day of fluid hydration and plenty of time for FOX News and all the breaking stories while we get settled in. I will likely be getting reacquainted and making sure everything is set up to make him as comfortable as possible and figuring out the shortest route to the best pizza place and ice cream shop within walking distance. I hope he'll be feeling up to lots of pizza and ice cream for at least a few days.
That's the awesome news for now........ we're off to see Ed's Mom and then catch a movie tonight -- we won't have much chance for a "date night" OUT for a bit, so we'll take advantage of our chance to see "Super 8" later this evening. Oh..... no more Neupogen shots for now too! What a relief! Ed's stomach is an unofficial pin cushion and I'm sure he'll be happy for the break.
As soon as we get settled and know what we're doing tomorrow, I'll update you....... Happy Tuesday!
Friday, June 17, 2011
10:15 AM Friday June 17th, 2011
Just a quick update...... Ed is doing well. He's quietly donating stem cells at the moment at the pheresis unit at UCLA. His body is not giving 'em up as quickly as we'd hoped, so he'll have a couple of extra collection days it seems, and starting today, we're doubling his Neupogen shots to try and give another jump start to the bone marrow. The thought is that if we double the dose over the weekend while there's no collection taking place, by Monday his bloodstream will be brimming with cells and they can finish the collection. If not, we still have Tuesday available as a safety net day before his expected admission on Wednesday, June 22nd. We'll just have to play it by ear. Luckily, there's no correlation between the length of time it takes to collect them and the quality of the cells being collected -- they are all good cells - just not in the quantity we hoped. But once we have the required amount, it's all a go forward for the procedure. His intake physical yesterday went well and everything else looks good.
The chest port is still a little sore today, but it sure beats all the poking that would be required for these multiple collection days, and they will use the port for the chemo, transplant and multiple transfusions anyway, so Ed is happy he waited to start the collection until they had the port inserted. He's getting jabbed everyday with Neuopogen injections (now twice a day) so that's enough already! His appetite is still good and he's eating well. Up to about 147 pounds - and enjoying pasta, pizza, ice cream, cupcakes (thanks Cheri), ribs, chocolate chip cookies (thanks Lenore) and donuts to get him there! A well-deserved silver lining (if there is one) to this whole thing!
Since this will be Ed's last weekend at home for a while, please give him a call or feel free to send cards to the house. We should be going to UCLA on Wednesday for the long haul, but my kids will be keeping the mail flow going and running errands, so he'll get his cards for sure. Prayers and finger-crossing are welcome and I'll post any news as it comes along. Thank you again for all of you and your energy. We look forward to seeing you on the other side of the transplant..........
The chest port is still a little sore today, but it sure beats all the poking that would be required for these multiple collection days, and they will use the port for the chemo, transplant and multiple transfusions anyway, so Ed is happy he waited to start the collection until they had the port inserted. He's getting jabbed everyday with Neuopogen injections (now twice a day) so that's enough already! His appetite is still good and he's eating well. Up to about 147 pounds - and enjoying pasta, pizza, ice cream, cupcakes (thanks Cheri), ribs, chocolate chip cookies (thanks Lenore) and donuts to get him there! A well-deserved silver lining (if there is one) to this whole thing!
Since this will be Ed's last weekend at home for a while, please give him a call or feel free to send cards to the house. We should be going to UCLA on Wednesday for the long haul, but my kids will be keeping the mail flow going and running errands, so he'll get his cards for sure. Prayers and finger-crossing are welcome and I'll post any news as it comes along. Thank you again for all of you and your energy. We look forward to seeing you on the other side of the transplant..........
Thursday, June 16, 2011
10 AM Thursday June 16th, 2011
Just a quick update for today - Ed is back over a the stem cell collection unit this morning. Yesterday they collected 36,000 of the 2 million stem cells they need for the procedure. We were hoping for more, but it just means some extra days of collection til we reach the goal. Thankfully, its not a painful process, just boring to laying in bed hooked up to machinery. But he can watch movies or listen to a book on tape or read magazines, so that will help make the time go faster.
I'm back at the hotel working, paying bills and organizing my lists. We'll meet up for lunch land then go to the physical exam and lab appointments this afternoon, then back home to Thousand Oaks, hopefully before rush hour traffic. Ed will probably have to come back tomorrow for more collection, but the permaport surgery went well and he's just got a litle chest soreness, not enough to keep him from driving. It's so much more comfortable for him than having to have IVs in each arm and get constantly poked for the collections. He gets enough of that with the blood tests and Neupogen shots.
We're hoping for a weekend of beautiful weather -- it will be his last weekend at home for a while and it would be nice to get out and enjoy some sunshine - keep your fingers crossed!
Happy Birthday Zanners!
I'm back at the hotel working, paying bills and organizing my lists. We'll meet up for lunch land then go to the physical exam and lab appointments this afternoon, then back home to Thousand Oaks, hopefully before rush hour traffic. Ed will probably have to come back tomorrow for more collection, but the permaport surgery went well and he's just got a litle chest soreness, not enough to keep him from driving. It's so much more comfortable for him than having to have IVs in each arm and get constantly poked for the collections. He gets enough of that with the blood tests and Neupogen shots.
We're hoping for a weekend of beautiful weather -- it will be his last weekend at home for a while and it would be nice to get out and enjoy some sunshine - keep your fingers crossed!
Happy Birthday Zanners!
Wednesday, June 15, 2011
5:40 PM Wednesday, June 15th, 2011
By the by, I went through some of the setting and permission codes on the dashboard and changed the comment permission to "anyone", so those of you who have been having trouble, try again. Maybe it will work now.
5 PM Wednesday, June 15th, 2011
Just arrived back at Tiverton House after a long day at the hospital. Ed's surgery went well after the delays of the morning scheduling and he is proudly sporting a perma-cath and all the requisite bandaging for some sympathy points. No showering for a while - he's going to have to get over his "baths are for sissies" deal and get used to a good soak now and again. I will run out later and get him a polka-dot shower cap and some Mr. Bubble for entertainment! Send rubber ducky care packages!
The first round of pheresis went just fine - I took him lunch before they hooked him up and then the nurse explained all the machinery and let me watch inside the holding tank as it spun the blood around to separate the components to draw off the stem cells. It is actually not a particularly new technology - she said they have had some of the machines since 1989, but that what they can do with the blood products is remarkable and advancing all the time. The shuttle service between Tiverton House and UCLA is fabulous - it's only 3 blocks distance, so I actually walked it back at lunch time so I could check out the shops and it was a lovely walk - less than 10 minutes including making mental notes of the Coffee Bean & Tea Leaf, Ralphs, BestBuy, Trader Joe's, Burger King and Victoria Secret, which are all part of the route. There is a beautiful church with a tall bell steeple near by and the sound of the bells is wonderful. The ivy covered buildings are gorgeous and the Geffen Playhouse is a block away as well. I really hope Ed will be feeling well enough to spend a little time exploring the area before we go home after he's discharged in July. I will certainly be checking some of it out on my own during morning runs - part of the "take care of me" plan I will have in place so I don't get burned out.
No surprise to many of you who know me that I've been teetering on the brink of overload lately. Working hard to change that right away and plan better. That superhero thinking is so insidious and creeps in before you know it, then BAM! The crash. Thanks to my dear children, best friends and a couple of truly tragic photos, I've realized I need a new game plan and am investing time in setting it up to level the playing field. It will be good for all of us.. ....and quite necessary. Those of you who have offered help may just find your phone ringing, so be ready or delete my number. (I didn't mean to make that sound like a threat...more of a dare I guess.) Of course if you aren't able to do some crazy task I mention, just use the word "eggplant" in a sentence and all bets are off. That's an old secret code my girlfriends and I used to use and it seems like it might work in this situation too. No explanations necessary. I apologize to any of you who may have been scratching your heads after talking to me lately wondering "what happened to HER?" I realize that I have not been my usual self and may have sounded bewildered or distant or non-communicative. Working on staying aware and away from that.
We have another long day at UCLA tomorrow - stem cell collection in the morning and then blood work in the afternoon and then his pre-admit physical with the nurse practioner at 2:30. Then we'll be going back to Thousand Oaks. We'll have to wait until Thursday night to find out if they have collected enough stem cells, if not, we'll have to drive back down Friday morning and keep coming back each day until enough are harvested. Some patients take as long as 12-15 days of harvesting, but the average is 3-5.
If Ed's feeling up to it, we'll probably go out and walk a bit around Westwood tonight and maybe get pizza or something. We won't be walking too far however, since on Sunday I stepped on and got stung by a bee about 5 minutes before guests arrived for my son's graduation party. My left foot (great movie title) is swollen and red and feels numb so I'm taking benadryl and wearing flat loafers until the swelling goes down. Feels like I'm wearing a prostetic food somehow so it's a little tender to walk a long distance. I don't think I've been stung by a bee in 20 years, but of course it has to happen just before a party. I'm surprised I wasn't stung on the end of my nose the way things have been going!
Anyway, thanks for your faithful following of the blog and the calls and messages to Ed. Several of you have told me that you can't post comments anymore - don't know what the heck is up with the inner workings, but feel free to send me an e-mail at liz@lloydsplumbing.net and I'll reply. Love you all and depend on your thoughts and prayers. It matters.
Love,
Liz & Ed
The first round of pheresis went just fine - I took him lunch before they hooked him up and then the nurse explained all the machinery and let me watch inside the holding tank as it spun the blood around to separate the components to draw off the stem cells. It is actually not a particularly new technology - she said they have had some of the machines since 1989, but that what they can do with the blood products is remarkable and advancing all the time. The shuttle service between Tiverton House and UCLA is fabulous - it's only 3 blocks distance, so I actually walked it back at lunch time so I could check out the shops and it was a lovely walk - less than 10 minutes including making mental notes of the Coffee Bean & Tea Leaf, Ralphs, BestBuy, Trader Joe's, Burger King and Victoria Secret, which are all part of the route. There is a beautiful church with a tall bell steeple near by and the sound of the bells is wonderful. The ivy covered buildings are gorgeous and the Geffen Playhouse is a block away as well. I really hope Ed will be feeling well enough to spend a little time exploring the area before we go home after he's discharged in July. I will certainly be checking some of it out on my own during morning runs - part of the "take care of me" plan I will have in place so I don't get burned out.
No surprise to many of you who know me that I've been teetering on the brink of overload lately. Working hard to change that right away and plan better. That superhero thinking is so insidious and creeps in before you know it, then BAM! The crash. Thanks to my dear children, best friends and a couple of truly tragic photos, I've realized I need a new game plan and am investing time in setting it up to level the playing field. It will be good for all of us.. ....and quite necessary. Those of you who have offered help may just find your phone ringing, so be ready or delete my number. (I didn't mean to make that sound like a threat...more of a dare I guess.) Of course if you aren't able to do some crazy task I mention, just use the word "eggplant" in a sentence and all bets are off. That's an old secret code my girlfriends and I used to use and it seems like it might work in this situation too. No explanations necessary. I apologize to any of you who may have been scratching your heads after talking to me lately wondering "what happened to HER?" I realize that I have not been my usual self and may have sounded bewildered or distant or non-communicative. Working on staying aware and away from that.
We have another long day at UCLA tomorrow - stem cell collection in the morning and then blood work in the afternoon and then his pre-admit physical with the nurse practioner at 2:30. Then we'll be going back to Thousand Oaks. We'll have to wait until Thursday night to find out if they have collected enough stem cells, if not, we'll have to drive back down Friday morning and keep coming back each day until enough are harvested. Some patients take as long as 12-15 days of harvesting, but the average is 3-5.
If Ed's feeling up to it, we'll probably go out and walk a bit around Westwood tonight and maybe get pizza or something. We won't be walking too far however, since on Sunday I stepped on and got stung by a bee about 5 minutes before guests arrived for my son's graduation party. My left foot (great movie title) is swollen and red and feels numb so I'm taking benadryl and wearing flat loafers until the swelling goes down. Feels like I'm wearing a prostetic food somehow so it's a little tender to walk a long distance. I don't think I've been stung by a bee in 20 years, but of course it has to happen just before a party. I'm surprised I wasn't stung on the end of my nose the way things have been going!
Anyway, thanks for your faithful following of the blog and the calls and messages to Ed. Several of you have told me that you can't post comments anymore - don't know what the heck is up with the inner workings, but feel free to send me an e-mail at liz@lloydsplumbing.net and I'll reply. Love you all and depend on your thoughts and prayers. It matters.
Love,
Liz & Ed
Tuesday, June 14, 2011
2 PM Tuesday, June 14th, 2011
Flexibility is the order of the day.....or week......or lifetime it seems! Things are still going well and Ed is feeling good, but the schedule has changed since last week. No surgeons available today at UCLA, so we're rescheduled for TOMORROW morning for the surgery to implant the chest port, then starting stem cell collection in the afternoon. Don't know yet how many days that will take, but we'll just go day-by-day with the flow until they have enough. Our coordinator told us that she's had a couple of patients recently who had to go through the pheresis 9 to 12 times before the collection was sufficient. Hopefully, Ed will be lucky and they will obtain the necessary cells within 3-5 collections, which is more typical. It's not a painful process, just time-consuming with the out-patient trips to UCLA each day for the collection process. We are still scheduled for him to be admitted on the 22nd for the conditioning chemo with the transplant to happen on the 28th, unless it takes longer to collect the adequate amount of cells.
We will be leaving for UCLA shortly and staying overnight at the Tiverton House so we can be on time for the early surgery Wednesday without having to fight rush-hour traffic in the morning. We can walk around Westwood tonight and maybe catch dinner and a movie.......since it is my birthday!
I'll let you know when Ed's out of surgery tomorrow and how the collection is going.
Happy Tuesday!
We will be leaving for UCLA shortly and staying overnight at the Tiverton House so we can be on time for the early surgery Wednesday without having to fight rush-hour traffic in the morning. We can walk around Westwood tonight and maybe catch dinner and a movie.......since it is my birthday!
I'll let you know when Ed's out of surgery tomorrow and how the collection is going.
Happy Tuesday!
Friday, June 10, 2011
10 AM Friday, June 10, 2011
Well, Ed had his Rituxan yesterday at Dr. Menco's office and after reading the PET scan from Tuesday, it appears that the chemos have done their job. Dr. Menco says that Ed is cancer-free from all indications on the scan. Such good news!! We still need to go forward with the stem cell transplant because of the almost-certain rate of return that is characteristic of mantle-cell, but he has nice clean stem cells to harvest and that means he has a good chance of re-building a brand new clean immune system that will be strong and healthy. It's been a long haul, but seems like everything is beginning to pay off and Ed will be going into the stem cell procedure with the best possible chance of success! A big plus that helps lessen the anxiety of the days ahead at UCLA.
Tyler graduated from high school yesterday and that was a proud moment. Life does keep moving forward and good things happen even in the face of struggles.
I hope you all have a struggle-free weekend filled with good things! I'll update you next week when we start the process at UCLA!
Liz
Tyler graduated from high school yesterday and that was a proud moment. Life does keep moving forward and good things happen even in the face of struggles.
I hope you all have a struggle-free weekend filled with good things! I'll update you next week when we start the process at UCLA!
Liz
Wednesday, June 8, 2011
9:30 AM Wednesday June 8th, 2011
Made it through another night at home. Grateful for the gift of sleeping in our own bed! Amazing how the little things really can mean so much - familiar pillows and the sounds of the birds when I wake up. Even the feel of standing in my own shower with my cozy mango-colored robe hanging just outside the door! The aroma of freshly brewed chocolate raspberry coffee in a hand-painted mug my daughter made me for Mother's Day. And my jeans slipped on just right to conceal the ever-so-slight muffin top which the hospital food is hoping to help blossom into a muffin bottom as well! Will definately pack my tennies and take advantage of some laps around the UCLA campus and the fitness room at the Tiverton House! Ed is finally available to take back the weight he lost and I gained!
Ida has returned from her trip to be in Arizona for her grandson's brain surgery on Monday - all went better than expected and they were able to remove the tumor and biopsy it - thankfully it's benign. After some watchful after-care, he should recover fully and be able to have a healthy life. Thank goodness for prayers and miracles.
Looking forward to seeing Ed's sister and brother-in-law, Ginny & Per for dinner tonight along with Ed's mom, Lou and sister Sandy. Ginny & Per are here visiing from Arizona and I'm anxious to hear all about their recent & fabulous cruise to the Mediterranean - I'll get my dose of some vicarious living! They will then be leaving to take Lou and Ed's sister Sandy to Julesburg, Colorado for the 90th birthday party of Ed's aunt Pauline this weekend. Really wish we could be there - it's SOOOOO inspiring to spend time with people who have so much life experience to share, especially since Pauline is famous state-wide for her delicious homemade cinnamon rolls and her beautiful quilts! A purposeful and dedicated life for sure. Pauline, we will be there in thought and spirit and wouldn't have missed it for anyting less important than a stem cell transplant!
Tyler's graduation is tomorrow and then one of my VBFs (very best friends) is arriving Saturday on the train from La Jolla to help with Tyler's celebration on Sunday. Her birthday was 2 days ago, so we'll be toasting all kinds of events this weekend and having joyful time celebrating milestones and miracles. I'm definately feeling due for a little of that!
Well, must get back to the plumbing biz and my endless list-making activities. Sometimes when I'm really overwhelmed by the lists, I actually make a list of stuff I've ALREADY done, just for the satisfaction of crossing it all off and seeing it complete. Sort of cathartic. Today, I will just put on my list to make a list of those items........
Have a wonderful day and don't forget to be thankful for the tiny things that make life wonderful even for a fleeting moment. If you string enough together.......you can smile through a good part of the day. We'll practice together. I got a great card from another VBF (Lenore) the other day that said "Tina is so tough that her poodle skirt has a bull-dog on it. But you're tougher!" I'm going to remember that card all day today - perhaps even have it made into a laminated keychain. Seems good.
That's it for now. Puttin' on my bulldog inside with a Cairn terrier face. I'll let you know how it works out!
Ida has returned from her trip to be in Arizona for her grandson's brain surgery on Monday - all went better than expected and they were able to remove the tumor and biopsy it - thankfully it's benign. After some watchful after-care, he should recover fully and be able to have a healthy life. Thank goodness for prayers and miracles.
Looking forward to seeing Ed's sister and brother-in-law, Ginny & Per for dinner tonight along with Ed's mom, Lou and sister Sandy. Ginny & Per are here visiing from Arizona and I'm anxious to hear all about their recent & fabulous cruise to the Mediterranean - I'll get my dose of some vicarious living! They will then be leaving to take Lou and Ed's sister Sandy to Julesburg, Colorado for the 90th birthday party of Ed's aunt Pauline this weekend. Really wish we could be there - it's SOOOOO inspiring to spend time with people who have so much life experience to share, especially since Pauline is famous state-wide for her delicious homemade cinnamon rolls and her beautiful quilts! A purposeful and dedicated life for sure. Pauline, we will be there in thought and spirit and wouldn't have missed it for anyting less important than a stem cell transplant!
Tyler's graduation is tomorrow and then one of my VBFs (very best friends) is arriving Saturday on the train from La Jolla to help with Tyler's celebration on Sunday. Her birthday was 2 days ago, so we'll be toasting all kinds of events this weekend and having joyful time celebrating milestones and miracles. I'm definately feeling due for a little of that!
Well, must get back to the plumbing biz and my endless list-making activities. Sometimes when I'm really overwhelmed by the lists, I actually make a list of stuff I've ALREADY done, just for the satisfaction of crossing it all off and seeing it complete. Sort of cathartic. Today, I will just put on my list to make a list of those items........
Have a wonderful day and don't forget to be thankful for the tiny things that make life wonderful even for a fleeting moment. If you string enough together.......you can smile through a good part of the day. We'll practice together. I got a great card from another VBF (Lenore) the other day that said "Tina is so tough that her poodle skirt has a bull-dog on it. But you're tougher!" I'm going to remember that card all day today - perhaps even have it made into a laminated keychain. Seems good.
That's it for now. Puttin' on my bulldog inside with a Cairn terrier face. I'll let you know how it works out!
Tuesday, June 7, 2011
2:30 Tuesday, June 7, 2011
Well, all that prayin' and finger-crossin' seems to be working --- so far this is the most number of days Ed has made it past chemo without having to go back into the hospital. We're at 5 and counting..... We see Dr. Menco on Thursday for blood work to check his counts and for another dose of Rituxan as they really pull out all the stops to get him ready for the stem cell procedure.
We spent the better part of yesterday down at UCLA signing consent forms, meeting with Dr. de Vos and met many of the people on the transplant team. We toured the phersesis unit where they will collect the stem cells and saw the very sophisticated machinery that does that job. We saw the surgical unit where his chest catheter will be placed next Tuesday morning just prior to the beginning of the collection and we toured the Tiverton House where we will be staying after his discharge in July until he is stable enough to go further away from the hospital. We are going to stay overnight there just one night next week to get a feel for it since we have to make trips to UCLA on both Monday afternoon and then again Tuesday morning. We have booked the Conrad Hilton suite in the hotel, which seems very nice and is right in the heart of Westwood and close to lots of restaurants and markets, shopping, etc. They have a free shuttle back and forth the 3 blocks to the hospital that runs from 5 AM to 9 PM, so that will help with the frequent visits for transfusions and lab work in the period immediately after his discharge. The neighborhood is beautiful and the campus will be quiet for summer so it should be a nice place to take short walks when he's feeling up to it.
It's coming up pretty fast and we got lots of information the past few days. We've been able to speak to some people who have been through a stem cell transplant and have them share some of their perspective and experience from a patient side. There seems to be a whole gamut of experiences and each person had a different tale to tell, but all have made it successfully to the other side, obviously! Some have spoken of the frustration & loneliness of being hospitalized for such a long period - Ed already has wrestled that alligator and knows it well, so I think he's pretty prepared. Most of the people we've spoken to have been diagnosed with different various lymphomas - we've only spoken to one person who actually has mantle cell lymphoma, but she s doing fine after receiving amazing care from her husband through the ordeal. She is in her 70s and that was very encouraging.
Dr. de Vos did have a long chat with Ed yesterday about post-transplant activities. He said for Ed not to even THINK about coming back to work for 3 months and even then, he can't do any hands on plumbing for several more months. Ed must also especially protect himself from exposure to dusty, weedy, dirt or digging in any kind of dirt because of the high risk of pulmonary infections. One of the chemos that he will receive as a conditioning treatment before the transplant has a lung damaging side effect that will make him very susceptible to respiratory infections, which the doctor warned are very hard to cure. Also, he will remain extremely sun-sensitive from this point on and will need to wear protective clothing in the sun to avoid developing melanoma, etc. No more cutting weeds and trees at the lakehouse and frying all day in the boats! We are going to collectively force him into some self-care activities and I'm sure it will take a whole committee! I'll probably set up a registration table for volunteers soon after we arrive home. Its certainly a job bigger than me!
Meanwhile, we are home these next few days and I'm giving Ed his daily Neupogen injections. Luckily, there doesn't seem to be much of a black market for Neupogen, or I'd have an armed guard posted outside of our refrigerator. When we got the 4 boxes of pre-filled syringes last Friday, the receipt in the brown paper bag from the UCLA pharmacy was for $12,439.80. Each syringe has about one-sixteenth of a teaspoon in it so I always wear my glasses to make sure I don't waste any as I transfer it. So THAT'S how Amgen keeps all the lights burning in that giant building that we can see from across our backyard!
Anyway, the information has been overwhelming, the numbers staggering, but the gratitude humbling at how lucky we are to live in these times with so much at our disposal and the resources we enjoy. So many others have gone before with so much less and paved the way by participating in clinical trials, toughing through the treatments without all the comfort drugs and kept going when I'm sure they wanted to give up. I strive each day to keep the blessings remembered to help me find a gentle place in this chaos. Those of you who know Ed realize that gentle is not what he's looking for here, the chaos suits him just fine. But hopefully we'll both find what we need through the process and come out changed for the better.
In the next few days I will post the address for UCLA and Tiverton House where Ed will be able to get cards (just not during the isolation period) throughout the process and once I'm set up in the room, the blog will get more attention since I won't be running around so much and we'll be more confined. I will also let you know about visitors once we move to Tiverton House. Perhaps we can meet for coffee or dinner in Westwood sometimes when we need a little company and a change of faces.
Two more days until my youngest graduates from high school! What a milestone for him and a sigh with some relaxed shoulders for me. I'm looking forward to seeing my whole family together to celebrate him on Sunday -- I've missed them so much these past months as my focus has been so narrowed. My grandkids will certainly provide some exhuberance and heartbursting joy to the day.
Kristin's birthday is this weekend as well, so there will undoubtedly be some Engelker roof-raising as she turns 27! It's nice for Ed to be home to celebrate these events and get a little taste of summer before the transplant. I'll let you know how it all goes in a few days. Meanwhile, enjoy the warming weather, love eachother and be joyful.
Love,
Liz
We spent the better part of yesterday down at UCLA signing consent forms, meeting with Dr. de Vos and met many of the people on the transplant team. We toured the phersesis unit where they will collect the stem cells and saw the very sophisticated machinery that does that job. We saw the surgical unit where his chest catheter will be placed next Tuesday morning just prior to the beginning of the collection and we toured the Tiverton House where we will be staying after his discharge in July until he is stable enough to go further away from the hospital. We are going to stay overnight there just one night next week to get a feel for it since we have to make trips to UCLA on both Monday afternoon and then again Tuesday morning. We have booked the Conrad Hilton suite in the hotel, which seems very nice and is right in the heart of Westwood and close to lots of restaurants and markets, shopping, etc. They have a free shuttle back and forth the 3 blocks to the hospital that runs from 5 AM to 9 PM, so that will help with the frequent visits for transfusions and lab work in the period immediately after his discharge. The neighborhood is beautiful and the campus will be quiet for summer so it should be a nice place to take short walks when he's feeling up to it.
It's coming up pretty fast and we got lots of information the past few days. We've been able to speak to some people who have been through a stem cell transplant and have them share some of their perspective and experience from a patient side. There seems to be a whole gamut of experiences and each person had a different tale to tell, but all have made it successfully to the other side, obviously! Some have spoken of the frustration & loneliness of being hospitalized for such a long period - Ed already has wrestled that alligator and knows it well, so I think he's pretty prepared. Most of the people we've spoken to have been diagnosed with different various lymphomas - we've only spoken to one person who actually has mantle cell lymphoma, but she s doing fine after receiving amazing care from her husband through the ordeal. She is in her 70s and that was very encouraging.
Dr. de Vos did have a long chat with Ed yesterday about post-transplant activities. He said for Ed not to even THINK about coming back to work for 3 months and even then, he can't do any hands on plumbing for several more months. Ed must also especially protect himself from exposure to dusty, weedy, dirt or digging in any kind of dirt because of the high risk of pulmonary infections. One of the chemos that he will receive as a conditioning treatment before the transplant has a lung damaging side effect that will make him very susceptible to respiratory infections, which the doctor warned are very hard to cure. Also, he will remain extremely sun-sensitive from this point on and will need to wear protective clothing in the sun to avoid developing melanoma, etc. No more cutting weeds and trees at the lakehouse and frying all day in the boats! We are going to collectively force him into some self-care activities and I'm sure it will take a whole committee! I'll probably set up a registration table for volunteers soon after we arrive home. Its certainly a job bigger than me!
Meanwhile, we are home these next few days and I'm giving Ed his daily Neupogen injections. Luckily, there doesn't seem to be much of a black market for Neupogen, or I'd have an armed guard posted outside of our refrigerator. When we got the 4 boxes of pre-filled syringes last Friday, the receipt in the brown paper bag from the UCLA pharmacy was for $12,439.80. Each syringe has about one-sixteenth of a teaspoon in it so I always wear my glasses to make sure I don't waste any as I transfer it. So THAT'S how Amgen keeps all the lights burning in that giant building that we can see from across our backyard!
Anyway, the information has been overwhelming, the numbers staggering, but the gratitude humbling at how lucky we are to live in these times with so much at our disposal and the resources we enjoy. So many others have gone before with so much less and paved the way by participating in clinical trials, toughing through the treatments without all the comfort drugs and kept going when I'm sure they wanted to give up. I strive each day to keep the blessings remembered to help me find a gentle place in this chaos. Those of you who know Ed realize that gentle is not what he's looking for here, the chaos suits him just fine. But hopefully we'll both find what we need through the process and come out changed for the better.
In the next few days I will post the address for UCLA and Tiverton House where Ed will be able to get cards (just not during the isolation period) throughout the process and once I'm set up in the room, the blog will get more attention since I won't be running around so much and we'll be more confined. I will also let you know about visitors once we move to Tiverton House. Perhaps we can meet for coffee or dinner in Westwood sometimes when we need a little company and a change of faces.
Two more days until my youngest graduates from high school! What a milestone for him and a sigh with some relaxed shoulders for me. I'm looking forward to seeing my whole family together to celebrate him on Sunday -- I've missed them so much these past months as my focus has been so narrowed. My grandkids will certainly provide some exhuberance and heartbursting joy to the day.
Kristin's birthday is this weekend as well, so there will undoubtedly be some Engelker roof-raising as she turns 27! It's nice for Ed to be home to celebrate these events and get a little taste of summer before the transplant. I'll let you know how it all goes in a few days. Meanwhile, enjoy the warming weather, love eachother and be joyful.
Love,
Liz
Friday, June 3, 2011
5 PM Friday June 4th, 2011
I know, I know, it's been 3 days and I haven't been on the blog. I apologize - it's been a super busy week and thankfully, Ed has been feeling good. Yesterday Ed had his last regular chemo before the stem cell process. He is starting to feel a little tired today, but not too bad. We know he has a window of a couple of days before the chemo starts to beat him up, so he's hoping to get everything on his "to do" list done pretty quickly.
Our appointment at UCLA yesterday was postponed until Monday. By the time Ed was finished with him chemo yesterday, the traffic was pretty snarly and we couldn't get to UCLA in time to meet with the doctor, etc., so we'll be going down on Monday in the morning. Hopefully, Ed will still be feeling well enough that it won't be too much - he's also having a full-body CT scan on Tuesday and Rituxan on Thursday. Our stem cell coordinator is delivering the Neupogen to me on her way home today to save us a trip to the UCLA pharmacy since she lives in Ventura and passes by us on her way. We're meeting in the Oaks Mall parking lot for the "drug deal". Hopefully the golf-cart security guards won't be interested in re-enacting any scenes from "Mall Cop" and bust us while we move the goods to the ice chest in my car! That would be quite a scene and somewhat complicated to explain!
Well, the call just came in for me to meet our Neupogen connection at the mall, so I'm signing off. Have a wonderful Friday evening!
Our appointment at UCLA yesterday was postponed until Monday. By the time Ed was finished with him chemo yesterday, the traffic was pretty snarly and we couldn't get to UCLA in time to meet with the doctor, etc., so we'll be going down on Monday in the morning. Hopefully, Ed will still be feeling well enough that it won't be too much - he's also having a full-body CT scan on Tuesday and Rituxan on Thursday. Our stem cell coordinator is delivering the Neupogen to me on her way home today to save us a trip to the UCLA pharmacy since she lives in Ventura and passes by us on her way. We're meeting in the Oaks Mall parking lot for the "drug deal". Hopefully the golf-cart security guards won't be interested in re-enacting any scenes from "Mall Cop" and bust us while we move the goods to the ice chest in my car! That would be quite a scene and somewhat complicated to explain!
Well, the call just came in for me to meet our Neupogen connection at the mall, so I'm signing off. Have a wonderful Friday evening!
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