Wow, I just realized it's been 8 days since I last posted......all is still going well and Ed has been home and infection free now for the longest period since February! He's been working some at the shop and puttering around with his toys a little, but I'm going to have to come up with a serious "honey do" list pretty quickly to fill in the gaps! He tires easily still but he's really looking so much better and is happy to be losing that "chemotherapy" look. He's got good color, his whiskers are coming back and his eyes are not so hollow. Getting all those chemicals out of his system has been a long process and he's getting better each day that he doesn't over exert himself.
We are still planning to go to the lake house for Labor Day, but Ed's been so anxious to see that beautiful scenery (bucolic bison and bursting bikinis - not necessarily in that order) that he decided to go up this weekend. He just left a couple of hours ago with his friend Tom to meet Ryan and some other friends up there. He's got plenty of sunscreen, sun protective clothing, a hat and strict instructions from me, which I'm sure he is gleefully shredding into little teeny bits of confetti that are going out the car window on the 101 as we speak! He is so anxious to get back to "normal" living......whatever in the heck THAT is......and he deserves to kick up his heels just a little. It would probably make me crazy and I'd hover too much, so I'm staying home for some rest, retail therapy and romping with my grandkids. It's a real leap of faith for me to leave him in charge of himself, but I gave him "the look" along with his list of do's and don'ts so I'm sure he'll be fine. That being said, how 'bout them Dodgers????
Be well, have a great weekend and TGIF!
Love,
Liz
Friday, August 19, 2011
Thursday, August 11, 2011
8 AM Thursday, August 11, 2011
Hi everyone..... all is well at the Engelker house so far this week. Dr. DeVos gave Ed a good review on Tuesday - blood counts are slowly creeping up, which is good and he appears to be right on track for the building back up process. He gave Ed the go ahead to start getting a little more active and pushing himself a little to build up some physical strength. No workouts and personal trainer yet, but more walking and activity to build stamina. He has a couple more days on the antibiotics and then we'll be done with those, thank goodness!
We're going to consult with an orthopaedist now to try and get to the bottom of the problems Ed has had with his arms and shoulders for several months now to determine if there is an injury, nerve damage, or just weekness that is causing the range of motion issues. Hopefully an MRI will reveal some answers. Ed is eating well and putting on a little weight slowly, which is good. He got a little too much sun last weekend and is suffering the consequences - viral lesions on his face that are caused by sun exposure, so I think he'll start to be more careful and keep hats and protective clothing on. No more baking on the boats for this guy!
Thanks for the delicious birthday cake that our friends John and Gail brought over and the cheesecake from Ronda and Kyle! It was a few days of yummy at our house!
That's it for now. Labor Day is drawing near and we're planning to go to the lake if we get clearance from the doctors. Our next appointment is August 23rd, so we're working to keep Ed healthy and strong to get the go-ahead.
Happy Wednesday to all! Chat soon! Liz
We're going to consult with an orthopaedist now to try and get to the bottom of the problems Ed has had with his arms and shoulders for several months now to determine if there is an injury, nerve damage, or just weekness that is causing the range of motion issues. Hopefully an MRI will reveal some answers. Ed is eating well and putting on a little weight slowly, which is good. He got a little too much sun last weekend and is suffering the consequences - viral lesions on his face that are caused by sun exposure, so I think he'll start to be more careful and keep hats and protective clothing on. No more baking on the boats for this guy!
Thanks for the delicious birthday cake that our friends John and Gail brought over and the cheesecake from Ronda and Kyle! It was a few days of yummy at our house!
That's it for now. Labor Day is drawing near and we're planning to go to the lake if we get clearance from the doctors. Our next appointment is August 23rd, so we're working to keep Ed healthy and strong to get the go-ahead.
Happy Wednesday to all! Chat soon! Liz
Monday, August 8, 2011
10 AM Monday August 8th, 2011
I know it's been a few days since an update.......please know that falls under the category of "no news is good news"!
Ed is doing well - no more infections, still on the antibiotics and his counts from last week's blood work were looking up. He is still feeling pretty weak, but with patience and more time without any infections, he will get stronger -- it's just a slow process. All of the procedures, chemos, medications and infections have certainly taken their toll, but his prognosis is good - certainly much, much better with the stem cell transplant behind him. Its not easy for him to be patient, and he expects so much from himself. He is really working hard at hardly working so his body can heal and recoup!
Thanks for all the birthday wishes, messages, texts, cards and calls. Ed especially wants each of you to know how much your constant contact means. He appreciates it all so very much. It was a quieter birthday than usual for Ed, but by next year, he'll be ready to paint the town again!
Ed has another doctor appointment on Tuesday the 9th and I'll let you know how that goes. We wish you all a good week ahead!
Ed is doing well - no more infections, still on the antibiotics and his counts from last week's blood work were looking up. He is still feeling pretty weak, but with patience and more time without any infections, he will get stronger -- it's just a slow process. All of the procedures, chemos, medications and infections have certainly taken their toll, but his prognosis is good - certainly much, much better with the stem cell transplant behind him. Its not easy for him to be patient, and he expects so much from himself. He is really working hard at hardly working so his body can heal and recoup!
Thanks for all the birthday wishes, messages, texts, cards and calls. Ed especially wants each of you to know how much your constant contact means. He appreciates it all so very much. It was a quieter birthday than usual for Ed, but by next year, he'll be ready to paint the town again!
Ed has another doctor appointment on Tuesday the 9th and I'll let you know how that goes. We wish you all a good week ahead!
Wednesday, August 3, 2011
3 PM Wednesday, August 3rd, 2011
Ed's Birthday Today! Certainly a celebration to have made it through everything to get to today! He came into the shop this morning and the entire staff sang Happy Birthday and shared breakfast followed by red velvet cake with candles and all. Tonight, Lou and the kids are joining us for a birthday dinner at King's Restaurant in Calabasas, where Ed loves the amazing bread!
Yesterday he had blood work done and we saw Dr. DeVos. His counts are doing great - on their way toward the normal range and everything looks good. He's still on the antibiotics, as they did identify 2 types of bacteria in his blood - Dr. DeVos felt they were from the chest port, so we're glad he doesn't need to have another one of those, EVER, if all goes well.
Ed is puttering around waiting for his hotrod to be finished and we're doing our best to keep him away from dirty things and places and keeping the hand sanitizer nearby. He's eating pretty well and hopefully will start to gain back his weight and strength quickly.
Happy Birthday to Ed and we hope to see much more of many of you in the coming months!
Liz
Yesterday he had blood work done and we saw Dr. DeVos. His counts are doing great - on their way toward the normal range and everything looks good. He's still on the antibiotics, as they did identify 2 types of bacteria in his blood - Dr. DeVos felt they were from the chest port, so we're glad he doesn't need to have another one of those, EVER, if all goes well.
Ed is puttering around waiting for his hotrod to be finished and we're doing our best to keep him away from dirty things and places and keeping the hand sanitizer nearby. He's eating pretty well and hopefully will start to gain back his weight and strength quickly.
Happy Birthday to Ed and we hope to see much more of many of you in the coming months!
Liz
Monday, August 1, 2011
9 AM Monday, August 1st, 2011
Okay, I can't believe its already August!!!! 2 more days until Ed's birthday.....a special one for sure given all he's been through this year. Blessings to have made it this far through all the chaos.
It was a great weekend......my grandsons' birthday party on Saturday was such a fantastic and fun day -- my daughter Stacy and her husband Gary are just rockstar parents and very creative with the kid parties! It was hot towards the end of the day out in Valencia and the party was at the park near their home, but a wonderful time was had by all! Lou spent most of the afternoon with Ed watching movies and sitting outside on the patio where it was much cooler in Thousand Oaks! She fed him minestrone soup from Octavio's Restaurant (he loves it!) and then Ed and I went and had pizza for dinner and watched another movie - "Harry Brown" with Michael Caine.
Sunday was heaven! Stayed in bed until almost 2 PM just lounging, watching the food channel, movies, dozing and drinking coffee. Had eggs and pastries in bed and then finally hoisted myself vertical so I could go get a manicure and pedicure and pick up some delicious food for dinner. Grilled steaks, baked potatoes, fresh green beans and parmesan crostini......yummy! Kristin and Pat came by and we had warm apple strudel and vanilla ice cream. We waddled back to our previous horizontal positions and Ed slept while I watched "The Blind Side" before falling asleep. All in all, a deservedly nice weekend without really any chaos.
Hope you all had a great weekend and will have a great week ahead. I take Ed back to UCLA clinic tomorrow for blood tests and exams. I'll report any news on the blog by Wednesday (the birthday boy's big day).
Liz
It was a great weekend......my grandsons' birthday party on Saturday was such a fantastic and fun day -- my daughter Stacy and her husband Gary are just rockstar parents and very creative with the kid parties! It was hot towards the end of the day out in Valencia and the party was at the park near their home, but a wonderful time was had by all! Lou spent most of the afternoon with Ed watching movies and sitting outside on the patio where it was much cooler in Thousand Oaks! She fed him minestrone soup from Octavio's Restaurant (he loves it!) and then Ed and I went and had pizza for dinner and watched another movie - "Harry Brown" with Michael Caine.
Sunday was heaven! Stayed in bed until almost 2 PM just lounging, watching the food channel, movies, dozing and drinking coffee. Had eggs and pastries in bed and then finally hoisted myself vertical so I could go get a manicure and pedicure and pick up some delicious food for dinner. Grilled steaks, baked potatoes, fresh green beans and parmesan crostini......yummy! Kristin and Pat came by and we had warm apple strudel and vanilla ice cream. We waddled back to our previous horizontal positions and Ed slept while I watched "The Blind Side" before falling asleep. All in all, a deservedly nice weekend without really any chaos.
Hope you all had a great weekend and will have a great week ahead. I take Ed back to UCLA clinic tomorrow for blood tests and exams. I'll report any news on the blog by Wednesday (the birthday boy's big day).
Liz
Friday, July 29, 2011
4:45 PM Friday, July 29th, 2011
Just a quick note to let you all know that Ed is home!!!! I picked him up today and I'm off to the pharmacy for antibiotics. They let him come home without a PICC line and we're going to try oral antibiotics. He'll definately be taking it VERY easy this weekend........he's on orders to rest and NO DRIVING until we see the doctor on Tuesday morning back at UCLA. Wish me luck keeping him sufficiently restrained, especiallty with the summer weather! My size 6-1/2 foot doesn't feel nearly big enough to put down sometimes. I guess I'll have to dig deep into my girl scout days and try some half-hitch or monkey's fist knot tying!
Tomorrow is a birthday party for 2 of my grandsons, turning 5 and 2, so I'll be going out to Valencia. Any babysitting volunteers?????? Just kidding......I'm sure Lou or the kids will come by to visit and I'll make sure he's got a fresh stack of movies. (I'll leave a coil of rope behind his chair, just for emergencies!)
Have a great weekend!
Liz
Tomorrow is a birthday party for 2 of my grandsons, turning 5 and 2, so I'll be going out to Valencia. Any babysitting volunteers?????? Just kidding......I'm sure Lou or the kids will come by to visit and I'll make sure he's got a fresh stack of movies. (I'll leave a coil of rope behind his chair, just for emergencies!)
Have a great weekend!
Liz
Wednesday, July 27, 2011
5 PM Wednesday, July 27, 2011
I was hoping to have a better idea about when Ed will be coming home, but so far the doctors won't commit to anything. They did detect positive bacteria cultures in his blood and as of yesterday they were still waiting for the sub-strain tests to come back to try and narrow it down so they can treat with the appropriate antibiotic. Today they identified yet another group of bateria in his blood, so they are making changes to his medications, but his fever has been gone for about 24 hours now, so that's a good sign. His counts were down today but not all the way back at ground zero, so we're hoping he will at least be home by the weekend.
They removed his chest port on Monday afternoon when they finally got him out of ER and into a regular room. This is a routine thing when a fever develops because access lines are the most likely source for bateria to enter the body. He will likely need to have a new PICC line inserted before he goes home so we can continue with the IV antibiotics that will undoubtedly be needed, but it's not painful and he doesn't need anesthesia for it. We're really getting pretty good at this routine (unfortunately!) but at least we know what to expect and we're prepared. Ed's feeling much better today than he was over the weekend. He really didn't admit to me just how sick he was feeling until I got back in town. I stayed overnight on Monday and most of Tuesday, but today I'm getting caught up at the office and trying to unpack and get reorganized from being away. I'll be back down there tomorrow and try and get some more information and an idea about their plan for the rest of the week. Its hard to find out much on the phone -- there are so many people involved in the process and no one person seems to hold the ultimate decision on a day to day basis because of the teaching rotations, etc. Its a little frustrating, but just par for the course in that kind of environment.
Hope you are all well and I'll get back with more information as soon as I have it.
Liz
They removed his chest port on Monday afternoon when they finally got him out of ER and into a regular room. This is a routine thing when a fever develops because access lines are the most likely source for bateria to enter the body. He will likely need to have a new PICC line inserted before he goes home so we can continue with the IV antibiotics that will undoubtedly be needed, but it's not painful and he doesn't need anesthesia for it. We're really getting pretty good at this routine (unfortunately!) but at least we know what to expect and we're prepared. Ed's feeling much better today than he was over the weekend. He really didn't admit to me just how sick he was feeling until I got back in town. I stayed overnight on Monday and most of Tuesday, but today I'm getting caught up at the office and trying to unpack and get reorganized from being away. I'll be back down there tomorrow and try and get some more information and an idea about their plan for the rest of the week. Its hard to find out much on the phone -- there are so many people involved in the process and no one person seems to hold the ultimate decision on a day to day basis because of the teaching rotations, etc. Its a little frustrating, but just par for the course in that kind of environment.
Hope you are all well and I'll get back with more information as soon as I have it.
Liz
Monday, July 25, 2011
1PM Monday, July 25, 2011
Greetings from Sacramento.....on a stop over from Seattle flying into Burbank this afternoon. Sorry for the missing days of blogging. Life has been just a little complicated the past week or so from several angles and I've been attempting to manage things much like a juggler does - trying to keep all the balls in the air. Even though I seem to be given the opportunity to practice regularly, my skill level could use some work apparently....
Pressing and serious family health issues meant I needed to make a trip to Seattle as soon as was possible after Ed was stable, which seemed to be last week. I flew up late Thursday evening to spend final time with my favorite aunt Mary who is in renal failure with a short prognosis and being moved to hospice care today. My father's alzheimer's disease is progressing rapidly and he has recently been moved to a memory care ward of a facility in the Seattle suburbs and I needed to spend time with him as well. I left Ed in the capable care of Lou and the kids with him feeling fine and all the emergency information and meds laid out.
Unfortunately, Murphy clearly had other ideas for the weekend! Ed started developing a low-grade fever on Saturday and it became more difficult to manage on Sunday. The doctors at UCLA decided to order oral and IV antibiotics which we were able to coordinate via telephone and the home health nurse came to the house in the early evening to administer them. Just as they were finishing the dose, Ed began to get the rigors (uncontrollable shivering that usually signals a spiking fever) so the doctors decided he needed to be taken back to UCLA right away. Ryan and Aaron took him to UCLA ER and he remains there as of this moment because there are no beds available on the stem cell transplant unit.
I have spoken to him every few hours throughout the night and morning today and he is now feeling better and his fever is down from 103.9 to around 101. They may decide to pull out his chest port tubes again to culture them for bacteria but right now they are waiting for the blood cultures and labs to be read.
My plane arrives in Burbank around 4:30 and I will go home and pack some things and head down to UCLA immediately so I can find out what the plan of care will be and what the blood tests are showing. Infections can be very serious right now with his "baby" immune system, but I trust that they know exactly what to do for him. It's just a temporary set back and he'll get through it. When I know something more, I'll post an update to the blog.
It was a very emotional trip home to Seattle and much too short to feel at peace with my family there, but I hope to go back soon and spend more time. Obviously it has been distressing to be so far away from Ed during this situation as well. I usually stay with family or friends in Seattle and those circumstances have changed, so before my next trip, I will have to research a new place to stay, as I had a Twilight Zone type of experience at the "Hotel Satan" (as I have now come to call the place) where I stayed to be close to my family. I had never stayed there before and it seemed convenient so I took a chance. When I'm feeling more humorous, I'll detail the "you can't make this up" highlight reel of moments from the trip.
Meanwhile, I will focus on Ed's situation and get you updated as soon as possible. Must log off now and make my way to another gate for my next flight. Hope you all had a wonderful weekend.
Pressing and serious family health issues meant I needed to make a trip to Seattle as soon as was possible after Ed was stable, which seemed to be last week. I flew up late Thursday evening to spend final time with my favorite aunt Mary who is in renal failure with a short prognosis and being moved to hospice care today. My father's alzheimer's disease is progressing rapidly and he has recently been moved to a memory care ward of a facility in the Seattle suburbs and I needed to spend time with him as well. I left Ed in the capable care of Lou and the kids with him feeling fine and all the emergency information and meds laid out.
Unfortunately, Murphy clearly had other ideas for the weekend! Ed started developing a low-grade fever on Saturday and it became more difficult to manage on Sunday. The doctors at UCLA decided to order oral and IV antibiotics which we were able to coordinate via telephone and the home health nurse came to the house in the early evening to administer them. Just as they were finishing the dose, Ed began to get the rigors (uncontrollable shivering that usually signals a spiking fever) so the doctors decided he needed to be taken back to UCLA right away. Ryan and Aaron took him to UCLA ER and he remains there as of this moment because there are no beds available on the stem cell transplant unit.
I have spoken to him every few hours throughout the night and morning today and he is now feeling better and his fever is down from 103.9 to around 101. They may decide to pull out his chest port tubes again to culture them for bacteria but right now they are waiting for the blood cultures and labs to be read.
My plane arrives in Burbank around 4:30 and I will go home and pack some things and head down to UCLA immediately so I can find out what the plan of care will be and what the blood tests are showing. Infections can be very serious right now with his "baby" immune system, but I trust that they know exactly what to do for him. It's just a temporary set back and he'll get through it. When I know something more, I'll post an update to the blog.
It was a very emotional trip home to Seattle and much too short to feel at peace with my family there, but I hope to go back soon and spend more time. Obviously it has been distressing to be so far away from Ed during this situation as well. I usually stay with family or friends in Seattle and those circumstances have changed, so before my next trip, I will have to research a new place to stay, as I had a Twilight Zone type of experience at the "Hotel Satan" (as I have now come to call the place) where I stayed to be close to my family. I had never stayed there before and it seemed convenient so I took a chance. When I'm feeling more humorous, I'll detail the "you can't make this up" highlight reel of moments from the trip.
Meanwhile, I will focus on Ed's situation and get you updated as soon as possible. Must log off now and make my way to another gate for my next flight. Hope you all had a wonderful weekend.
Wednesday, July 20, 2011
9 AM Wednesday, July 20, 2011
All is well with Ed. Went to his doctor appointments on Monday afternoon and they said his labs looked fine. His overall white count is good, but neutrophil count was a little lower than they wanted, so I gave him an extra Neupogen injection when we got home. His platelets and red cells are right at the borderline of low normal, so they will just watch them to make sure they don't drop, which would require transfusing.
The home health care nurse will draw blood again on Thursday this week to see how his counts are doing and then he goes back to UCLA a week from tomorrow to check in with the doctor. So far, all is well. He has been given the okay to drive short distances and can get out a little in uncrowded places and walk in the neighborhood. Yesterday he washed his own car (?) but he gets pretty tired after just about any activity and he needs to rest as much as possible to not overdo. We'll see how long that lasts. He's really chomping at the bit to get going on SOMETHING.... and I can't blame him. I'm loosening my grip on the reins of warden because he just needs to learn to pace himself. Each day that goes by without a step backward is a day toward his goal of being back to doing the things he enjoys. We're just ticking 'em down.
He's eating better each day, even though foods don't taste normal to him yet. Probably a side effect of the chemo - most everything tastes like cardboard or has a metallic taste, but we're trying different things to see what works and everything is helping him get stronger. The doctors say the process takes many months, but we all know how quickly time seems to be going by at our age!
Thanks for staying in touch. Feel free to call Ed's cell. He'll usually answer unless he's sleeping.
Love to you all,
Liz
The home health care nurse will draw blood again on Thursday this week to see how his counts are doing and then he goes back to UCLA a week from tomorrow to check in with the doctor. So far, all is well. He has been given the okay to drive short distances and can get out a little in uncrowded places and walk in the neighborhood. Yesterday he washed his own car (?) but he gets pretty tired after just about any activity and he needs to rest as much as possible to not overdo. We'll see how long that lasts. He's really chomping at the bit to get going on SOMETHING.... and I can't blame him. I'm loosening my grip on the reins of warden because he just needs to learn to pace himself. Each day that goes by without a step backward is a day toward his goal of being back to doing the things he enjoys. We're just ticking 'em down.
He's eating better each day, even though foods don't taste normal to him yet. Probably a side effect of the chemo - most everything tastes like cardboard or has a metallic taste, but we're trying different things to see what works and everything is helping him get stronger. The doctors say the process takes many months, but we all know how quickly time seems to be going by at our age!
Thanks for staying in touch. Feel free to call Ed's cell. He'll usually answer unless he's sleeping.
Love to you all,
Liz
Monday, July 18, 2011
9 AM Monday, July 18, 2011
Another beautiful summer morning with lots of sunshine and blue sky. Ed and I got out of the house and tried to go see a movie last night - Horrible Bosses - but it was sold out when we got to the theater, so we turned around and went home. Caught the last half of 60 Minutes, watched a couple of TV movies and went to sleep by 10:30. Us boring old people ---- but it felt great. Especially after my adrenaline rush day on Saturday.
Ed has appointments this afternoon at the UCLA clinic and we'll hopefully get some answers about what the plan is for either having him stay at Tiverton House or coming back and forth to Thousand Oaks now. It's really their decision, so we'll be prepared either way by packing a light overnight bag before we leave at lunchtime. I think he's prefer to stay at home, but if he needs to be down their every day or two, the drive time is pretty tedious and time-consuming, so we'll probably opt for the Tiverton House. He's maintained his normal temperature range all weekend and hasn't felt too bad other than tired, but he sure is waiting for his appetite to come back and for food to taste normal again. Nothing he's used to eating tastes familiar - everything has a chemical or metallic taste which leaves his mouth coated with a heavy saliva that is really unpleasant. The doctors tell us it's normal and may continue that way for some months - uggh! But every day is one more forward, so we're just doing it.
He's not quite feeling like company - in person or on the phone too much, so if you call and he doesn't answer, just leave him a message - he does listen to them and appreciates hearing your voice. It may just take a few days or weeks for him to get feeling more energetic and social. Certainly to be expected.
We stopped and saw his GTO on Friday and it's GORGEOUS to say the least. The last little tweekings will be finished this week and then it will be home in our garage. I know he can't wait for that and will be anxious to get strong enough to drive it. Hopefully that will be soon. He needs something that will bring a great big smile to his face!
Have a happy Monday......
Love,
L:iz
Ed has appointments this afternoon at the UCLA clinic and we'll hopefully get some answers about what the plan is for either having him stay at Tiverton House or coming back and forth to Thousand Oaks now. It's really their decision, so we'll be prepared either way by packing a light overnight bag before we leave at lunchtime. I think he's prefer to stay at home, but if he needs to be down their every day or two, the drive time is pretty tedious and time-consuming, so we'll probably opt for the Tiverton House. He's maintained his normal temperature range all weekend and hasn't felt too bad other than tired, but he sure is waiting for his appetite to come back and for food to taste normal again. Nothing he's used to eating tastes familiar - everything has a chemical or metallic taste which leaves his mouth coated with a heavy saliva that is really unpleasant. The doctors tell us it's normal and may continue that way for some months - uggh! But every day is one more forward, so we're just doing it.
He's not quite feeling like company - in person or on the phone too much, so if you call and he doesn't answer, just leave him a message - he does listen to them and appreciates hearing your voice. It may just take a few days or weeks for him to get feeling more energetic and social. Certainly to be expected.
We stopped and saw his GTO on Friday and it's GORGEOUS to say the least. The last little tweekings will be finished this week and then it will be home in our garage. I know he can't wait for that and will be anxious to get strong enough to drive it. Hopefully that will be soon. He needs something that will bring a great big smile to his face!
Have a happy Monday......
Love,
L:iz
Sunday, July 17, 2011
Noon Sunday, July 17, 2011
What a glorious day today - the sun is shining and not too hot, the birds are singing, Ed is home dozing in his easy chair and there's just a gentle breeze outside!
Yesterday was an amazing day for sure..... my youngest daughter Lindsay turned 21. Unfortunately, Ed is still pretty housebound and taking it slow which is exactly what he needs to do so his Mom came over and stayed with him for the day. My daughter, my son Tyler and a longtime girlfriend Lenore celebrated Lindsay's 21st birthday by going skydiving! We drove up to Lompoc early in the morning and when the clouds and fog cleared, we got into a perfectly good airplace, climbed to 13,000 feet and then hurled ourselves out into the wild blue yonder! IT WAS UNBELIEVABLE AND FANTASTIC! We all LOVED it, and as soon as my feet were on the ground, I wanted to go again. It's nothing like you imagine it to be and very freeing and spiritual. We have photos and video that are just hilarious and we can't wait to go again. My son actually has been once before and yesterday did his jump from 18,000 feet, pulling his own parachute and passing the test to judge altitude and time the release, etc. He wants to get certified, but it's a long and expensive process, with a jump required at least every 30 days and 500 jumps to be completed before you can be a tandem instructor. I can absolutely see how people get hooked on this sport. You see God's country from the perspective of a bird and the quietness and serenity of the float after the parachute is open, is a crazy contrast to the noisy speed of the free fall portion when you first leave the aircraft. A symphony of experiences culminating in a powder puff landing that is no more jolting than stepping off the curb. A rush and an empowering experience to say the least! I highly recommend it! We finished her birthday by having dinner at Mastro's Steakhouse where she ordered her first cocktail - an appletini. They serve it with dry ice in it which makes for a great photo op. The wonderful piano player had the patrons sing a great Elton John rendition of Happy Birthday and we had a decadent meal of rib-eye, salmon, and lobster mashed potatoes, asparagus and ended with chocolate ganache cake and whipped cream. There were several Lamborghini's parked in the valet area, but we opted for the wheelbarrows to get us home as we were groaning and sated from our spectacular meal! It was a wonderful 21st birthday by any measure. We came home and watched our skydiving videos and laughed so hard at our funny faces!
Ed is sleeping right now but I'm going to wake him up shortly and take him for a drive out in this beautiful weather. Maybe we'll find a little stretch of beach and sit on a blanket for a bit, but I have to be careful and keep him out of the sun for more than a few minutes, as he's still quite sun sensitive from the chemo drugs. He's still feeling weak as a kitten and sleeping quite a bit, but so far his temps have been normal and he's not feeling any of the complications. No headaches or nausea. Just tired. I think he's frustrated cause he loves summer so much and wants to be doing more, but he's hanging in one day at a time. Not easy for him, but hopefully the last summer he'll have to do this treatment.
Have a wonderful Sunday afternoon and yeah......Carmageddon turned out to be another media frenzy that never materialized. Enjoy the sun.
Love,
Liz
Yesterday was an amazing day for sure..... my youngest daughter Lindsay turned 21. Unfortunately, Ed is still pretty housebound and taking it slow which is exactly what he needs to do so his Mom came over and stayed with him for the day. My daughter, my son Tyler and a longtime girlfriend Lenore celebrated Lindsay's 21st birthday by going skydiving! We drove up to Lompoc early in the morning and when the clouds and fog cleared, we got into a perfectly good airplace, climbed to 13,000 feet and then hurled ourselves out into the wild blue yonder! IT WAS UNBELIEVABLE AND FANTASTIC! We all LOVED it, and as soon as my feet were on the ground, I wanted to go again. It's nothing like you imagine it to be and very freeing and spiritual. We have photos and video that are just hilarious and we can't wait to go again. My son actually has been once before and yesterday did his jump from 18,000 feet, pulling his own parachute and passing the test to judge altitude and time the release, etc. He wants to get certified, but it's a long and expensive process, with a jump required at least every 30 days and 500 jumps to be completed before you can be a tandem instructor. I can absolutely see how people get hooked on this sport. You see God's country from the perspective of a bird and the quietness and serenity of the float after the parachute is open, is a crazy contrast to the noisy speed of the free fall portion when you first leave the aircraft. A symphony of experiences culminating in a powder puff landing that is no more jolting than stepping off the curb. A rush and an empowering experience to say the least! I highly recommend it! We finished her birthday by having dinner at Mastro's Steakhouse where she ordered her first cocktail - an appletini. They serve it with dry ice in it which makes for a great photo op. The wonderful piano player had the patrons sing a great Elton John rendition of Happy Birthday and we had a decadent meal of rib-eye, salmon, and lobster mashed potatoes, asparagus and ended with chocolate ganache cake and whipped cream. There were several Lamborghini's parked in the valet area, but we opted for the wheelbarrows to get us home as we were groaning and sated from our spectacular meal! It was a wonderful 21st birthday by any measure. We came home and watched our skydiving videos and laughed so hard at our funny faces!
Ed is sleeping right now but I'm going to wake him up shortly and take him for a drive out in this beautiful weather. Maybe we'll find a little stretch of beach and sit on a blanket for a bit, but I have to be careful and keep him out of the sun for more than a few minutes, as he's still quite sun sensitive from the chemo drugs. He's still feeling weak as a kitten and sleeping quite a bit, but so far his temps have been normal and he's not feeling any of the complications. No headaches or nausea. Just tired. I think he's frustrated cause he loves summer so much and wants to be doing more, but he's hanging in one day at a time. Not easy for him, but hopefully the last summer he'll have to do this treatment.
Have a wonderful Sunday afternoon and yeah......Carmageddon turned out to be another media frenzy that never materialized. Enjoy the sun.
Love,
Liz
Friday, July 15, 2011
9 AM Friday, July 15, 2011
It's good news Friday, in spite of the city-wide impending doom with "Carmaggedon" this weekend!
Ed is HOME.....as in Thousand Oaks, sleeping in his own bed last night! It came as quite a surprise yesterday when he called and told me the doctors had deciced to let him come home for the weekend. We had planned all along that he would be discharged to Tiverton House first. He will probably have to go back to Tiverton House next week and we'll find out for sure on Monday, but for the time being he is back in his own world and very happy about it! I think everyone was trying to work around the freeway closure and immense traffic grid-lock that they expect in the city and were trying to keep us out of that. I'm happy about that for sure.
The housekeeper is coming today to clean and sanitize the house so Ed is spending the day at his Mom's resting and watching TV. I don't want him in the middle of that dust and cleaning products etc. while the work is being done. I was caught off guard by the short notice so today was the soonest I could get someone out. He's pretty weak and just needs to lay low for a while and rest without pushing himself. Just getting dressed takes the wind out of him. (He slept for 5 hours straight when we got home yesterday.) No driving and no going anywhere for now. But at least he can sit in a chair on the patio for fresh air, etc. and he isn't cooped up in the same 4 walls. Mentally this will be very good for him. I've notified our oncologist and infection disease doctors here in Thousand Oaks that Ed is here and should something develop over the weekend that we need help with, I'll bring him to Los Robles for care. But we're just going to keep good thoughts and take the necessary precautions to make sure everything goes smoothly.
I'm working at the shop for a bit as Ida is off today babysitting her baby granddaughter, so I'll get to work now. Not sure if Ed will answer his phone today, but you can certainly leave messages.
I hope you all have a splendid and "carmaggedon - free" weekend.
Liz
Ed is HOME.....as in Thousand Oaks, sleeping in his own bed last night! It came as quite a surprise yesterday when he called and told me the doctors had deciced to let him come home for the weekend. We had planned all along that he would be discharged to Tiverton House first. He will probably have to go back to Tiverton House next week and we'll find out for sure on Monday, but for the time being he is back in his own world and very happy about it! I think everyone was trying to work around the freeway closure and immense traffic grid-lock that they expect in the city and were trying to keep us out of that. I'm happy about that for sure.
The housekeeper is coming today to clean and sanitize the house so Ed is spending the day at his Mom's resting and watching TV. I don't want him in the middle of that dust and cleaning products etc. while the work is being done. I was caught off guard by the short notice so today was the soonest I could get someone out. He's pretty weak and just needs to lay low for a while and rest without pushing himself. Just getting dressed takes the wind out of him. (He slept for 5 hours straight when we got home yesterday.) No driving and no going anywhere for now. But at least he can sit in a chair on the patio for fresh air, etc. and he isn't cooped up in the same 4 walls. Mentally this will be very good for him. I've notified our oncologist and infection disease doctors here in Thousand Oaks that Ed is here and should something develop over the weekend that we need help with, I'll bring him to Los Robles for care. But we're just going to keep good thoughts and take the necessary precautions to make sure everything goes smoothly.
I'm working at the shop for a bit as Ida is off today babysitting her baby granddaughter, so I'll get to work now. Not sure if Ed will answer his phone today, but you can certainly leave messages.
I hope you all have a splendid and "carmaggedon - free" weekend.
Liz
Wednesday, July 13, 2011
9 AM Wednesday July 13, 2011
Ed was finally moved back up to the stem cell unit around 5 PM yesterday. I drove down after work to get him re-situated in the new room and help him take a bath. After 3 days in ICU where they wouldn't even let him get up to brush his teeth, he was REALLY ready for a nice warm bath and some quiet time. ICU is nothing but interruptions, beeping machinery and endless poking and prodding. We watched a couple of shows on the Food channel (hoping it will kickstart his appetite) and I drove home around 1 AM.
They are planning to wean him off of all the meds and antibiotics today and if all goes well, he will likely be discharged to Tiverton House tomorrow afternoon. He can't WAIT to be out of that hospital. It's 3 weeks today since we checked him in and that's a long time for him to be cooped up! I know he will enjoy going for a short walk (as his energy permits) or even just sitting outside on the patio at Tiverton House. The sunshine will feel great and I'm glad the weather won't be ghastly hot for the first few days, although the weather report says triple digits by next Tuesday in the city. His counts are still low by normal standards, but are good for where he is in the stem cell recover process.
It's payroll processing this morning here at the office and I have packing and details to get organized for the stay at Tiverton House so I will sign off for now. Keep your fingers crossed for Ed's "parole hearing" tomorrow!
They are planning to wean him off of all the meds and antibiotics today and if all goes well, he will likely be discharged to Tiverton House tomorrow afternoon. He can't WAIT to be out of that hospital. It's 3 weeks today since we checked him in and that's a long time for him to be cooped up! I know he will enjoy going for a short walk (as his energy permits) or even just sitting outside on the patio at Tiverton House. The sunshine will feel great and I'm glad the weather won't be ghastly hot for the first few days, although the weather report says triple digits by next Tuesday in the city. His counts are still low by normal standards, but are good for where he is in the stem cell recover process.
It's payroll processing this morning here at the office and I have packing and details to get organized for the stay at Tiverton House so I will sign off for now. Keep your fingers crossed for Ed's "parole hearing" tomorrow!
Monday, July 11, 2011
11 PM Monday, July 11, 2011
Just got home from UCLA and want to let you know that Ed is doing okay. They have weaned him off of the blood pressure medication as of late this afternoon and everything was stable so far. If all continues to go well during the night, they will probably move him back up to the stem cell unit tomorrow. They have added an anti-fungal and another antiobiotic to his list of meds as a precaution since they still can't identify the source of the infection/fever from yesterday. He had a pretty bad headache this morning and his neck and back are a little sore from laying in one position and not being able to get up since yesterday afternoon, but the nurses are doing everything they can to make him comfortable with ice packs, warm compresses and lots of attention there in ICU. He had no appetite today, but hopefully he'll be back to eating by tomorrow.
Ed's white count was up a little today, his ANC is at .20, which is good and means the stem cells are starting to engraft, his platelets were up since the transfusion yesterday, but his red count is down, so they gave him 2 units of blood this evening while we were watching TV. They expect that to help with stabilizing his blood pressure as well. They really have everything quite well managed and down to a science, even though Ed is frustrated with all the interruptions and constant monitoring. Its not easy, especially being into this hospital stay for almost 3 weeks now, but it will all be worth it when he's on the other side and on his way to being able to do the things he loves to do. Pray for patience and strength!
Good night......
Ed's white count was up a little today, his ANC is at .20, which is good and means the stem cells are starting to engraft, his platelets were up since the transfusion yesterday, but his red count is down, so they gave him 2 units of blood this evening while we were watching TV. They expect that to help with stabilizing his blood pressure as well. They really have everything quite well managed and down to a science, even though Ed is frustrated with all the interruptions and constant monitoring. Its not easy, especially being into this hospital stay for almost 3 weeks now, but it will all be worth it when he's on the other side and on his way to being able to do the things he loves to do. Pray for patience and strength!
Good night......
11 AM Monday, July 11, 2011
Just when you think its safe to go back in the water..........
We had a very uneventful weekend in terms of news.....until late on Sunday. Ed was feeling pretty much the same and we watched some movies on Saturday, slept in late and then read the Sunday paper and hung out Sunday just watching TV. Around 4 PM Ed took a bath and by the time he got his clean PJs on and back in bed, everything started to change. He got chills and the rigors quite badly. Couldn't get warm and he was shaking so hard the nurse gave him Demerol to calm it down. Within 15 minutes the fever started and within 30 minutes his fever was 104. That's just how quickly these things can happen. But the team was on it, swarming the room and immediately responding with all the tools. By 6:30 he was resting comfortably and everything was calm. Fever was coming down, shaking was gone and he seemed to be back on track. I left to come home and get ready for work on Monday.
Because his platelet count was at 11 yesterday, they had to give him platelets because the thresshold is 10 WITHOUT a fever but its 20 WITH a fever. Around 7:30 they gave him platelets and for the first time since he's been getting blood and platelet transfusions for the past 6 months, he had a reaction to the platelets. He started getting short of breath and felt like he couldn't breathe. His fever went back up and his blood pressure dropped to 65/45 - very very low. They had given him a lot of fluids in an effort to bring it back up, but they couldn't get it where they wanted, so the doctor called me around 10 PM and explained everything that had happened and told me they needed to move him to ICU and put him on blood pressure medication, which requires monitoring every 5 minutes. Because the nursing staff to patient ratio in ICU is 1/1 that's where he needs to be until they can wean him off the BP medication - probably a day or two.
I threw on my sweats and drove back to UCLA. Because they aren't sure how long he will be in ICU, he most likely won't go back to the exact same room in the transplant unit, so I had to go and pack up all of our belongings and load the car. I visited with Ed for a couple of hours and then came home around 3 AM. The freeways are brutal at night because of the construction and it took me almost an hour and a half to get home! Yikes.
But I talked with Ed this morning twice already and I'm getting ready to head back down and visit. He says he feels ok but hasn't slept much. I can't stay overnight in ICU unless I sleep in one of the visitor waiting rooms, so I'll probably come home later this evening and I'll let you all know how he's doing. The doctors and nurses tell me not to worry.....that these situations are not uncommon with transplant patients, but staying calm is tough to do. Trying to take a deep breath with your stomach in your throat is quite a task. I find myself drawing on the breathing techniques that served me well during four natural childbirths - amazing what we remember and have to draw on when needed! Thank you Dr. Bradley!
Keep those prayers for Ed going!
Have a safe and gentle Monday. Love, Liz
We had a very uneventful weekend in terms of news.....until late on Sunday. Ed was feeling pretty much the same and we watched some movies on Saturday, slept in late and then read the Sunday paper and hung out Sunday just watching TV. Around 4 PM Ed took a bath and by the time he got his clean PJs on and back in bed, everything started to change. He got chills and the rigors quite badly. Couldn't get warm and he was shaking so hard the nurse gave him Demerol to calm it down. Within 15 minutes the fever started and within 30 minutes his fever was 104. That's just how quickly these things can happen. But the team was on it, swarming the room and immediately responding with all the tools. By 6:30 he was resting comfortably and everything was calm. Fever was coming down, shaking was gone and he seemed to be back on track. I left to come home and get ready for work on Monday.
Because his platelet count was at 11 yesterday, they had to give him platelets because the thresshold is 10 WITHOUT a fever but its 20 WITH a fever. Around 7:30 they gave him platelets and for the first time since he's been getting blood and platelet transfusions for the past 6 months, he had a reaction to the platelets. He started getting short of breath and felt like he couldn't breathe. His fever went back up and his blood pressure dropped to 65/45 - very very low. They had given him a lot of fluids in an effort to bring it back up, but they couldn't get it where they wanted, so the doctor called me around 10 PM and explained everything that had happened and told me they needed to move him to ICU and put him on blood pressure medication, which requires monitoring every 5 minutes. Because the nursing staff to patient ratio in ICU is 1/1 that's where he needs to be until they can wean him off the BP medication - probably a day or two.
I threw on my sweats and drove back to UCLA. Because they aren't sure how long he will be in ICU, he most likely won't go back to the exact same room in the transplant unit, so I had to go and pack up all of our belongings and load the car. I visited with Ed for a couple of hours and then came home around 3 AM. The freeways are brutal at night because of the construction and it took me almost an hour and a half to get home! Yikes.
But I talked with Ed this morning twice already and I'm getting ready to head back down and visit. He says he feels ok but hasn't slept much. I can't stay overnight in ICU unless I sleep in one of the visitor waiting rooms, so I'll probably come home later this evening and I'll let you all know how he's doing. The doctors and nurses tell me not to worry.....that these situations are not uncommon with transplant patients, but staying calm is tough to do. Trying to take a deep breath with your stomach in your throat is quite a task. I find myself drawing on the breathing techniques that served me well during four natural childbirths - amazing what we remember and have to draw on when needed! Thank you Dr. Bradley!
Keep those prayers for Ed going!
Have a safe and gentle Monday. Love, Liz
Friday, July 8, 2011
3 PM Friday, July 8, 2011
WOW! Ed has another week of "doing his time" as he calls it, under his belt. So far, so good......knock on wood. His appetite was actually a little better and he ate breakfast this morning. He slept pretty well last night and told the doctor he's really, really, REALLY ready to go home. So far his ANC (absolute neutrophil count) is still at 0, but that's expected. It has to be at point 5 for 2 days in a row before he can go home, but the doctor said that could happen by early next week. We will still undoubetedly have to go to Tiverton House for a bit, but since we can't really plan anything for certain yet, we're still just taking it one day at a time.
So thankfully, there isn't much to report again, but we'll take it!
Ed is catching up on lots of Ice Road Truckers and Pawn Stars. He got so tired of the Casey Anthony media coverage that he had to turn off the news! Thank goodness......all that yelling and agruing is exhausting.
Have a wonderful weekend.
Liz
So thankfully, there isn't much to report again, but we'll take it!
Ed is catching up on lots of Ice Road Truckers and Pawn Stars. He got so tired of the Casey Anthony media coverage that he had to turn off the news! Thank goodness......all that yelling and agruing is exhausting.
Have a wonderful weekend.
Liz
Wednesday, July 6, 2011
7 AM Wednesday, July 6th, 2011
Just a quick note of update.....Ed is still doing okay....actually, yesterday the doctor who saw him was surprised and pleased that his symptoms have been relatively moderate, compared to a lot of the patients who undergo this procedure. He's not particularly comfortable, but his tenacity and determination are definately working in his favor. One of the other patients who had a stem cell transplant a few days before Ed was moved to ICU yesterday for uncontollable bleeding related to her platelet counts, so we know that some people do suffer with some pretty serious complications. Obviously because of confidentiality rules, the nurses and doctors won't talk in specifics about other patients, but they do say that Ed is doing quite well under the circumstances. So far, so good it seems and we're grateful for that. No new mouth sores or issues to report, but his appetite is really getting sparse and it's getting harder to find anything that he will eat, but his weight is still at 147, so the doctor is okay with him just getting fluids and a few bites of canned pears or peaches, which is all he wants right now.
Last night was a rough night for sleep - the maintenance staff was doing something in the room next door and banging stuff against the wall and moving furniture repeatedly during the night. Very annoying to say the least, but Ed will catch up on his rest today and the staff promised that the work is done in that room for now. (Maybe they were just pounding out their frustrations about the Casey Anthony verdict !) I finally got up at 4:45 this morning after tossing and turning all night and drove home to shower and be in the office by 7. Will try and take a nap this afternoon before I go back down to the hospital.
Keep good thoughts and be well ........Liz
Last night was a rough night for sleep - the maintenance staff was doing something in the room next door and banging stuff against the wall and moving furniture repeatedly during the night. Very annoying to say the least, but Ed will catch up on his rest today and the staff promised that the work is done in that room for now. (Maybe they were just pounding out their frustrations about the Casey Anthony verdict !) I finally got up at 4:45 this morning after tossing and turning all night and drove home to shower and be in the office by 7. Will try and take a nap this afternoon before I go back down to the hospital.
Keep good thoughts and be well ........Liz
Tuesday, July 5, 2011
11 PM Monday, July 4th, 2011
Happy 4th....hope you all had a spectacular day filled with family, fun and fireworks!
Unfortunately, Ed is starting to feel the effects of the chemo and the transplant somewhat more....he's beginning to develop the mucositis which is so common wih this treatment.....it consists mostly of mouth sores but can spread to the esophagus and digestive system as well, which we hope won't happen. His counts have dropped way down so he had a platelet infusion today and the staff is doing everything to make him as comfortable as possible. He's trying to sleep as much as possible and just "lay low" and get through the day. He's still able to eat, which is good, even though he really doesn't have much of an appetite.
Long days ahead, but we're grateful for each one that passes by relatively uneventfully and quickly. Its the best we can hope for. Once the stem cells engraft he'll be on his way to healing and getting better. It just takes time.
Thanks for the cards, messages and prayers. They are a constant source of strength and encourgement.
I'll be back tomorrow with an update.
Unfortunately, Ed is starting to feel the effects of the chemo and the transplant somewhat more....he's beginning to develop the mucositis which is so common wih this treatment.....it consists mostly of mouth sores but can spread to the esophagus and digestive system as well, which we hope won't happen. His counts have dropped way down so he had a platelet infusion today and the staff is doing everything to make him as comfortable as possible. He's trying to sleep as much as possible and just "lay low" and get through the day. He's still able to eat, which is good, even though he really doesn't have much of an appetite.
Long days ahead, but we're grateful for each one that passes by relatively uneventfully and quickly. Its the best we can hope for. Once the stem cells engraft he'll be on his way to healing and getting better. It just takes time.
Thanks for the cards, messages and prayers. They are a constant source of strength and encourgement.
I'll be back tomorrow with an update.
Sunday, July 3, 2011
8 AM Sunday, July 2, 2011
After a long day yesterday, I fell asleep without updating the blog, so I am making sure to get to it first thing today. Ed is still feeling about the same -- just on the edge of crummy with no appetite, not much energy and super bored and wanting to go home. So far, he's experiencing manageable nausea, but no diarrhea, no mouth sores and just a couple of skin lesions. The nurses say he's doing well. We don't have his blood counts for today yet, but they've started the Neupogen shots to help control the dropping numbers as much as possible.
Ed added some excitement to the equation yesterday by falling in the bathroom at about 4;30 AM Saturday morning. He's okay, but it created a bit of hub-bub for the staff of course. It happened before I got here yesterday so I didn't witness it, but he remembers getting up to use the bathroom after the early morning blood draw. He was sleepy and NOT wearing the hospital-issue socks with the rubber skid-proof tracks on the bottom. He had put on a pair of his own socks from home. When he leaned forward to flush the toilet, he lost his balance and fell between the toilet and the sink, hitting his arm and side of his head. His right ear looks like Mike Tyson took a bite out of it, he's got a goose-egg above that ear (really more like a quail egg size thankfully), and he's got a pretty good-sized area of his right forearm that has the skin scraped off. Luckily, his platelet count is still okay, although its dropping too, so they want to get these injuries healed quickly to minimize the bleeding and infection risks. They immediately took him down for a head CT and everything looks fine there - no concussion or brain bleed. He's been read the riot act by the doctors and nurses about the sock issue and using the bedside urinal during the night instead of wandering to the bathroom in the dark when he's sleepy. After a fall, the staff is required to monitor him more closely and check his vital signs every 2 hours, so we didn't get much sleep last night. Hopefully he'll be comfortable enough to catch up on some rest today and then be back on schedule for fewer interruptions tonight.
The nurse practioner just came in and said the final results from the CT scan came in. Without thinking through the long-term implications of making such a declaration, she announced to Ed that "you have a perfect brain". I immediately concluded that she must not be married or that the radiology tech accidentally scanned the lower half of his body.......in any event, we all had a good laugh at her gaff. By the time she finished examing Ed and tried to leave, she could barely squeeze out the door - his ego was blocking it!! She has no idea about the magnitude of havoc she has just created. Forewarned is forearmed. None of us can EVER AGAIN expect to engage Ed in opposing viewpoints and come out victorious. By the time we leave here he'll probably have a "perfect brain" certificate (suitable for framing), and one in his wallet for on-the-go moments! Even with all the meds he's on, I have a hunch he won't forget this and years from now, he'll refer to this moment as having been worth the whole ordeal!
Well, I'm going to run out and get coffee and the Sunday paper. Mr Perfect Brain has just dozed off, but remains smiling.......
Happy Sunday!
Ed added some excitement to the equation yesterday by falling in the bathroom at about 4;30 AM Saturday morning. He's okay, but it created a bit of hub-bub for the staff of course. It happened before I got here yesterday so I didn't witness it, but he remembers getting up to use the bathroom after the early morning blood draw. He was sleepy and NOT wearing the hospital-issue socks with the rubber skid-proof tracks on the bottom. He had put on a pair of his own socks from home. When he leaned forward to flush the toilet, he lost his balance and fell between the toilet and the sink, hitting his arm and side of his head. His right ear looks like Mike Tyson took a bite out of it, he's got a goose-egg above that ear (really more like a quail egg size thankfully), and he's got a pretty good-sized area of his right forearm that has the skin scraped off. Luckily, his platelet count is still okay, although its dropping too, so they want to get these injuries healed quickly to minimize the bleeding and infection risks. They immediately took him down for a head CT and everything looks fine there - no concussion or brain bleed. He's been read the riot act by the doctors and nurses about the sock issue and using the bedside urinal during the night instead of wandering to the bathroom in the dark when he's sleepy. After a fall, the staff is required to monitor him more closely and check his vital signs every 2 hours, so we didn't get much sleep last night. Hopefully he'll be comfortable enough to catch up on some rest today and then be back on schedule for fewer interruptions tonight.
The nurse practioner just came in and said the final results from the CT scan came in. Without thinking through the long-term implications of making such a declaration, she announced to Ed that "you have a perfect brain". I immediately concluded that she must not be married or that the radiology tech accidentally scanned the lower half of his body.......in any event, we all had a good laugh at her gaff. By the time she finished examing Ed and tried to leave, she could barely squeeze out the door - his ego was blocking it!! She has no idea about the magnitude of havoc she has just created. Forewarned is forearmed. None of us can EVER AGAIN expect to engage Ed in opposing viewpoints and come out victorious. By the time we leave here he'll probably have a "perfect brain" certificate (suitable for framing), and one in his wallet for on-the-go moments! Even with all the meds he's on, I have a hunch he won't forget this and years from now, he'll refer to this moment as having been worth the whole ordeal!
Well, I'm going to run out and get coffee and the Sunday paper. Mr Perfect Brain has just dozed off, but remains smiling.......
Happy Sunday!
Friday, July 1, 2011
5 PM Friday, July 1, 2011
Sometimes no news is good news......and this is one of those days. Ed had a pretty quiet night last night and spent a good part of today resting and sleeping. His counts have dropped a bit more since yesterday and he's feeling pretty lethargic and sleepy with some mild nausea startng late this afternoon. (Sorry, didn't intend that to sound like a weather report, but I guess it does - kind of like "Cloudy With a Chance of Meatballs.) He had one mild episode of vomiting this afternoon but when I talked to him a few minutes ago he was feeling better and planning his daily rendevous with Bill O'Reilly. That seems to be a good barometer of how he's doing --- if he misses "The Factor", you know he's having a hard time. I've been working at the office all day (month end) but will leave to go back to UCLA when the 4th of July "get-outta-town" traffic eases up later this evening.
Ed did have the last bag of stem cells infused today, without the fanfare of cake and singing, but stem cells none the less. So he is officially finished with his cancer treatments. It has been a tough journey for him for sure and I hope the coming months are easier now that he won't have chemotherapy with which to content. Now we just wait.....and wait......and wait, which is also hard for Ed, but he's really working on his zen-master self. I gave him some yoga class gift certificates late last year, and soon he might actually look forward to using them!
I'll be back tomorrow to let you know how he's doing. Meanwhile, enjoy the holiday weekend, have a cold beer for Ed, and most of all, be safe!
Liz
Ed did have the last bag of stem cells infused today, without the fanfare of cake and singing, but stem cells none the less. So he is officially finished with his cancer treatments. It has been a tough journey for him for sure and I hope the coming months are easier now that he won't have chemotherapy with which to content. Now we just wait.....and wait......and wait, which is also hard for Ed, but he's really working on his zen-master self. I gave him some yoga class gift certificates late last year, and soon he might actually look forward to using them!
I'll be back tomorrow to let you know how he's doing. Meanwhile, enjoy the holiday weekend, have a cold beer for Ed, and most of all, be safe!
Liz
Thursday, June 30, 2011
5 PM Thursday, June 30, 2011
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.......
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.......
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!
Tuesday, May 31, 2011
2 PM Tuesday May 31, 2011
Back to the office so soon, but Ed got his Memorial Day Weekend at the lake so all is right with his world. Had his kids and some friends up and spent time out on the water, even though it was breezy and about 20 degrees cooler than we like it. The water is very high from the rainy spring and the lake is beautiful. Lots of boats out! My cousin came up on Saturday and had a little boating mishap that resulted in a couple of cracked/bruised ribs and a trip for the two of us to the ER in Templeton on Sunday. But thankfully, she's okay, just very sore and moving around pretty gingerly for a while.
Ed and the kids and friends really enjoyed their traditional holiday getaway with the boating during the day, bonfires at night and plenty of laughter, beer and late night fun. Cheryl had spent a lot of time preparing fantastic food ahead of time, so it was a relaxing time and a great start to the lakehouse summer fun!
Hope you all had a wonderful weekend as well!
More later as the week unfolds...... Hope you are all happy and looking forward to a wonderful summer of family, friends and fun!
Ed and the kids and friends really enjoyed their traditional holiday getaway with the boating during the day, bonfires at night and plenty of laughter, beer and late night fun. Cheryl had spent a lot of time preparing fantastic food ahead of time, so it was a relaxing time and a great start to the lakehouse summer fun!
Hope you all had a wonderful weekend as well!
More later as the week unfolds...... Hope you are all happy and looking forward to a wonderful summer of family, friends and fun!
Wednesday, May 25, 2011
4 PM Wednesday May 25, 2011
Lots of administrative stuff these past 2 days..... worked out the final round of chemo and the stem cell calendar, scheduling appointments, etc. for now through the beginning of August. It's a LOT but we're on the path now. Lots of deep breathing and exhaling!
Dr. Menco agreed to postpone his last chemo by a week to allow Ed to go to the lake this weekend. So we're off tomorrow mid-day - he was anxious to leave today but I just couldn't unravel everything and regroup that quickly. A good summer hurrah, me with my lasso at the ready if needed. A tame-ish holiday weekend is high on my wish list. I'll report back early next week......
Next chemo is scheduled for June 2nd, which will be outpatient at Dr. Menco's office - just a few hours of infusion. The afternoon we will spend at UCLA signing consent forms, having blood work, meeting with Dr. DeVos and then attending the stem cell support group montthly meeting that evening. A very long day. Then home for 11 days of daily injections of Neupagen to stimulate the cells while we are keeping our fingers crossed that he doesn't develop fevers or infection this time during his white cell crash.....willl be watching him very closely this time and putting big restrictions on his activities and germ contact.
On June 14th, he will have the porta-cath surgically inserted around 6:30 AM and a few hours later they will start the harvesting of the stem cells at the outpatient clinic next door to the the hospital at UCLA. That collection process will continue each day until they have retreived enough for the procedure - usually 3 to 5 days are needed. The timing worked out great for him to be home for Father's Day weekend and then he will be admitted to UCLA on the 21st for the big event. The final chemo session will start on the 22nd. Five days of very strong chemo for about 16 hours a day - pretty rough stuff, then one day of rest (in the hospital) and then the stem cell transplantation on the 28th. All of this will be inpatient at UCLA in the stem cell unit. They expect his counts to start dropping pretty dramatically within a few days and he'll be in "protective isolation" starting around the 1st of July.
Then we wait and watch while he gets blood products and whatever else he may need to cope with the aftermath of the chemo until his counts start to come up, signalling that the stem cells are engrafting and have rescued him. This waiting period is the roughest and most difficult time. They hope the engraftment process will take hold in about 10-12 days and his immune system will start to rebuild itself. Once his counts have reached .5 for 3 days in a row (still a VERY low white count number but a signal that progress is in the right direction) and he's feeling up to it, they may release him to stay in a facility very close to UCLA for probably another 2 weeks where we can be close by for tranfusions, etc. which are usually required quite often. Then when he's stable, we'll be able to go back to Thousand Oaks for his long-term recovery and healing, probably sometime the end of July or beginning of August.
That's the long and the short of it as of this moment. Thngs could change, but this is as close to a schedule as we have right now.
Ed has been feeling better the past 2-3 days and is really looking forward to getting away for a few days and enjoying the down time.
Hope you all have a wonderful Memorial Day weekend! Be safe and enjoy the sunshine!
Dr. Menco agreed to postpone his last chemo by a week to allow Ed to go to the lake this weekend. So we're off tomorrow mid-day - he was anxious to leave today but I just couldn't unravel everything and regroup that quickly. A good summer hurrah, me with my lasso at the ready if needed. A tame-ish holiday weekend is high on my wish list. I'll report back early next week......
Next chemo is scheduled for June 2nd, which will be outpatient at Dr. Menco's office - just a few hours of infusion. The afternoon we will spend at UCLA signing consent forms, having blood work, meeting with Dr. DeVos and then attending the stem cell support group montthly meeting that evening. A very long day. Then home for 11 days of daily injections of Neupagen to stimulate the cells while we are keeping our fingers crossed that he doesn't develop fevers or infection this time during his white cell crash.....willl be watching him very closely this time and putting big restrictions on his activities and germ contact.
On June 14th, he will have the porta-cath surgically inserted around 6:30 AM and a few hours later they will start the harvesting of the stem cells at the outpatient clinic next door to the the hospital at UCLA. That collection process will continue each day until they have retreived enough for the procedure - usually 3 to 5 days are needed. The timing worked out great for him to be home for Father's Day weekend and then he will be admitted to UCLA on the 21st for the big event. The final chemo session will start on the 22nd. Five days of very strong chemo for about 16 hours a day - pretty rough stuff, then one day of rest (in the hospital) and then the stem cell transplantation on the 28th. All of this will be inpatient at UCLA in the stem cell unit. They expect his counts to start dropping pretty dramatically within a few days and he'll be in "protective isolation" starting around the 1st of July.
Then we wait and watch while he gets blood products and whatever else he may need to cope with the aftermath of the chemo until his counts start to come up, signalling that the stem cells are engrafting and have rescued him. This waiting period is the roughest and most difficult time. They hope the engraftment process will take hold in about 10-12 days and his immune system will start to rebuild itself. Once his counts have reached .5 for 3 days in a row (still a VERY low white count number but a signal that progress is in the right direction) and he's feeling up to it, they may release him to stay in a facility very close to UCLA for probably another 2 weeks where we can be close by for tranfusions, etc. which are usually required quite often. Then when he's stable, we'll be able to go back to Thousand Oaks for his long-term recovery and healing, probably sometime the end of July or beginning of August.
That's the long and the short of it as of this moment. Thngs could change, but this is as close to a schedule as we have right now.
Ed has been feeling better the past 2-3 days and is really looking forward to getting away for a few days and enjoying the down time.
Hope you all have a wonderful Memorial Day weekend! Be safe and enjoy the sunshine!
Monday, May 23, 2011
8:30 AM Monday, May 23, 2011
Not too much news today....yet at least, but should have some by later. Ed is up and at the office this morning, feeling definately better than yesterday and the day before. He wants to try and see a chiropractor for some of his back and neck issues today and we'll go to Dr. Menco to discuss the plan for the next couple of weeks. Ed would like to delay the next chemo so he can go to the lake for Memorial Day weekend....we'll see what happens. Lots of date juggling ahead for all the intricate planning that goes into the stem cell process, so we'll try and get that set up with our transplant coordinator so we can nail down the plan.
More to report later...... Happy Monday!
More to report later...... Happy Monday!
Saturday, May 21, 2011
8 AM Saturday, May 21, 2011
Its a sunny morning here in Thousand Oaks - a little bit of foggy haze as I look out in the direction of the ocean, but I'm sure it will burn off and provide more beautiful sunshine today. I hope Ed will feel well enough and it will get warm enough for him to sit outside and soak up some of the healing warmth. My cousin in coming over this afternoon to help me put the final details together for Tyler's graduation celebration and get his announcements finished. Trying to get a much as possible out of the way to focus on the UCLA visit and the arrangements that need to be in place for that journey to go as smoothly as possible. Lots to do and think about.
Ed had a little bit better day yesterday and by late afternoon, he got dressed and actually got out of the house for a bit to get somethings done with his hot rod. The trip out did wipe him out and he was pretty uncomfortable by the time he got home. The pain in his left shoulder and arm is pretty intense and the general neck and back pain he has from just being in bed so much is really starting to wear him down quite a bit. He did go back to taking the prescription pain meds last night after using Tylenol as we try to get him backed off the Dilaudid. He was really restless all night, trying ice packs, heating pads, etc. and he ultimately just sat up watching TV for quite a while. He's finally sleeping this morning for a bit and I hope today will get better. Monday we will re-address the shoulder and arm situation with the orthopaedic doctor and he has a chiro appointment for his neck and back that I hope will help. We were hoping for a few days of feeling pretty good before the next chemo, but the healing is taking longer this time. We just gotta roll with it and keep focused on the long term goals, as hard as that is sometimes in the moment.
If some of you have called him the past couple of days and he hasn't answered the phone or called you back, please be patient......he's just not feeling up to much of anything right now and it takes all his energy to just work through the discomfort right now. He so appreciates hearing your voice mails or hearing gthe comments from the blog, etc. He just can't respond right now. Thanks for understanding.
Have a wonderful Saturday. Take a big deep breath and appreciate your health today - it is surely a precious thing.
Ed had a little bit better day yesterday and by late afternoon, he got dressed and actually got out of the house for a bit to get somethings done with his hot rod. The trip out did wipe him out and he was pretty uncomfortable by the time he got home. The pain in his left shoulder and arm is pretty intense and the general neck and back pain he has from just being in bed so much is really starting to wear him down quite a bit. He did go back to taking the prescription pain meds last night after using Tylenol as we try to get him backed off the Dilaudid. He was really restless all night, trying ice packs, heating pads, etc. and he ultimately just sat up watching TV for quite a while. He's finally sleeping this morning for a bit and I hope today will get better. Monday we will re-address the shoulder and arm situation with the orthopaedic doctor and he has a chiro appointment for his neck and back that I hope will help. We were hoping for a few days of feeling pretty good before the next chemo, but the healing is taking longer this time. We just gotta roll with it and keep focused on the long term goals, as hard as that is sometimes in the moment.
If some of you have called him the past couple of days and he hasn't answered the phone or called you back, please be patient......he's just not feeling up to much of anything right now and it takes all his energy to just work through the discomfort right now. He so appreciates hearing your voice mails or hearing gthe comments from the blog, etc. He just can't respond right now. Thanks for understanding.
Have a wonderful Saturday. Take a big deep breath and appreciate your health today - it is surely a precious thing.
Friday, May 20, 2011
9 AM Friday, May 20, 2011
Rough day yesterday for sure. Probably the worst Ed has felt since the beginning of this journey, except for the incident with the cooling mat in the hospital. This last chemo (the ARA-C) REALLY put him in the dirt, along with 8 days of antibiotics and antifungal meds IV - they were very strong. His body is just in a really intensely toxic mode from all that so he's feeling super weak, mentally foggy, shaky and full of anxiety because he feels so bad. RN Lisa came and assessed him yesterday and reported to Dr. Menco. They made some changes to his medications and she talked to him at length about the value of continuing consistently with the ones that will help him get better, instead of just resisting and deciding to stop everything at once. I believe he heard her a little better this time so he was more cooperative with it yesterday, but it was rough for sure.
I'm at the office this morning and will go home now to work there so he won't be by himself - it feels too precarious to leave him alone today. I just talked to him and he says he's feeling a tiny bit better than yesterday, so that's a good sign. A couple more days and he should be much stronger. He hasn't eaten for 2 days again, but I'll try and get a few bites of something in him today.
We got word yesterday afternoon that Dr. Menco & Dr. DeVos have agreed that it's best to skip the 6th chemo round (the last ARA-C) because its just too hard on him. He will have his scheduled CHOP chemo next week and then we'll proceed to the stem cell transpslant, but I don't know the schedule of dates yet. Hopefully he'll get a little break, but I know they want to move quickly during the window of time that the cancer is very suppressed and not give it a chance to get the upper hand again.
Thank you once more for the continued prayers and thoughts. It is surely a rough time right now and he has the toughest part yet to come with the stem cell transplant just around the corner. Its a confusing mixture of fear and hope right now as each tough day feels long and unending for him. This is truly a battle to be won by the journey of putting one foot in front of the other each day, even when taking that step feels like crap. And believe me, a lot of days, it does! But his strength and perseverance is amazing as we take turns leading the fight.
Hoping today is filled with healing progress.
I'm at the office this morning and will go home now to work there so he won't be by himself - it feels too precarious to leave him alone today. I just talked to him and he says he's feeling a tiny bit better than yesterday, so that's a good sign. A couple more days and he should be much stronger. He hasn't eaten for 2 days again, but I'll try and get a few bites of something in him today.
We got word yesterday afternoon that Dr. Menco & Dr. DeVos have agreed that it's best to skip the 6th chemo round (the last ARA-C) because its just too hard on him. He will have his scheduled CHOP chemo next week and then we'll proceed to the stem cell transpslant, but I don't know the schedule of dates yet. Hopefully he'll get a little break, but I know they want to move quickly during the window of time that the cancer is very suppressed and not give it a chance to get the upper hand again.
Thank you once more for the continued prayers and thoughts. It is surely a rough time right now and he has the toughest part yet to come with the stem cell transplant just around the corner. Its a confusing mixture of fear and hope right now as each tough day feels long and unending for him. This is truly a battle to be won by the journey of putting one foot in front of the other each day, even when taking that step feels like crap. And believe me, a lot of days, it does! But his strength and perseverance is amazing as we take turns leading the fight.
Hoping today is filled with healing progress.
Thursday, May 19, 2011
10 AM Thursday, May 19, 2011
Ed's home! He's really feeling like crap, but that will get better with each day. Still have 4 more days of IV antibiotics at home so RN Lisa is coming by at noon to get a new IV started and show me the ropes for this round. Don't have any news yet about stem cell schedule changes (if any) but we're just waiting for all the "think-tank" doctors to collaborate and let us know what's going to be the best way to proceed.
Just a waiting game of getting stronger the next few days. Sorry for the short blog, just not much to report today, which is a good thing. We just need some uneventful days of healing and rest out of the hospital.
Hope you all are doing well. We miss our friends and family and feel a little out of the loop, but we will be back!
Just a waiting game of getting stronger the next few days. Sorry for the short blog, just not much to report today, which is a good thing. We just need some uneventful days of healing and rest out of the hospital.
Hope you all are doing well. We miss our friends and family and feel a little out of the loop, but we will be back!
Tuesday, May 17, 2011
4:30 PM Tuesday, May 17, 2011
Quick Tuesday afternoon update. Ed is still in the hospital but doctors are optimistic that they will be able to release him tomorrow around lunchtime. One more day for safety......final look at his counts, etc. and a little more time to strategize about antibiotic options for home etc. We're hoping they will convert to oral, but if not, it only takes about an hour to float in another PICC line for IV type, and we've done that at home before so it's not a big deal. He's just very anxious to have some time out of the hospital.
Had some REALLY good news from UCLA today - his bone marrow biopsy came back negative, meaning that the chemo has done it's job of eradicating the cancer in that area. That's good news for the stem cell coordinator to present to the committee tomorrow, along with his other pre-screening tests, which all came back good as well. That makes it pretty much a "GO" for the stem cell transplant, which is coming up fast.........
By the end of this week, we should have the plan pretty much hammered out in terms of dates for remaining chemo, mobilization of the stem cells, harvesting, transplant, etc. There are some options to explore and Dr. De Vos and Dr. Menco will collaborate on that and make decisions hopefully by Friday. Then Dr. Menco is off on vacation for 2 weeks to Amsterdam (his birthplace) and he'll be back in time for the big stuff. Good timing! We feel much safer when we have him available to manage everything that happens at our local hospital up until the UCLA stay. Lots of details to attend to, so it will be a busy few weeks, but we're hoping to have a tiny window of get-away time before the transplant. My son Tyler graduates from high school on June 9th (he's the baby of my 4) so that's in the mix as well, making for an oh-so-jam-packed calendar. Guess that's what life is all about!
Ed is still having a lot of pain today with the left arm and shoulder as well as considerable bone pain, but meds help and it's just part of the super big chemo that we now know is working. Makes it a little more bearable when you know the impact is working toward good results.
Keep strong thoughts and prayers for everything to stay stable so he can come home tomorrow. :)
Had some REALLY good news from UCLA today - his bone marrow biopsy came back negative, meaning that the chemo has done it's job of eradicating the cancer in that area. That's good news for the stem cell coordinator to present to the committee tomorrow, along with his other pre-screening tests, which all came back good as well. That makes it pretty much a "GO" for the stem cell transplant, which is coming up fast.........
By the end of this week, we should have the plan pretty much hammered out in terms of dates for remaining chemo, mobilization of the stem cells, harvesting, transplant, etc. There are some options to explore and Dr. De Vos and Dr. Menco will collaborate on that and make decisions hopefully by Friday. Then Dr. Menco is off on vacation for 2 weeks to Amsterdam (his birthplace) and he'll be back in time for the big stuff. Good timing! We feel much safer when we have him available to manage everything that happens at our local hospital up until the UCLA stay. Lots of details to attend to, so it will be a busy few weeks, but we're hoping to have a tiny window of get-away time before the transplant. My son Tyler graduates from high school on June 9th (he's the baby of my 4) so that's in the mix as well, making for an oh-so-jam-packed calendar. Guess that's what life is all about!
Ed is still having a lot of pain today with the left arm and shoulder as well as considerable bone pain, but meds help and it's just part of the super big chemo that we now know is working. Makes it a little more bearable when you know the impact is working toward good results.
Keep strong thoughts and prayers for everything to stay stable so he can come home tomorrow. :)
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