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!
Tuesday, May 31, 2011
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. :)
Monday, May 16, 2011
7 PM Monday, May 16, 2011
Just a quick post with better news -- looks like Ed turned the corner on this most recent chemo session battle. His whites have come up to just over 2.0 so that's progress in the right direction and usually the beginning of the upswing. Thank goodness! His platelets are still a little up and down and his hemoglobin was low enough that he needed more blood today, but the fevers are tapering off. If all continues to go well during the night and his counts look good in the morning, there's a chance he might get to go home tomorrow - need to get all doctors in agreement first etc. Keep your fingers crossed!
Oh yeah..... orthopaedic surgeon came in today to look at Ed's left arm weakness -- things it could be a rotator cuff issue - weird and unexplained - but he wants to just wait and see since the first diagnostic thing he'd normally do would be to put a needle in to find out what's going on. Since platelets are low, that's not a good plan right now. Said it could be one of several things, but just wants to wait until more immediate issues are stable before tackling that one. Everyone agreed and Ed feels that the pain is not as much today, so maybe whatever was going on it getting better on its own. He's coming back to check on Ed tomorrow.
That's it for now. Whites are up -- good news to end the day!
Oh yeah..... orthopaedic surgeon came in today to look at Ed's left arm weakness -- things it could be a rotator cuff issue - weird and unexplained - but he wants to just wait and see since the first diagnostic thing he'd normally do would be to put a needle in to find out what's going on. Since platelets are low, that's not a good plan right now. Said it could be one of several things, but just wants to wait until more immediate issues are stable before tackling that one. Everyone agreed and Ed feels that the pain is not as much today, so maybe whatever was going on it getting better on its own. He's coming back to check on Ed tomorrow.
That's it for now. Whites are up -- good news to end the day!
8 AM Monday, May 16, 2011
Wish I could report that Ed was able to come home over the weekend, but such was not the case. This session of ARA-C with the bigger dose has definately kicked his butt. He's been having a lot of bone and joint pain over the weekend and still spiking fevers, but less frequently than last week. His counts are still low - .7 for whites and the platelets are up and down so he'll probably get some more platelets today. They also gave him a shot of Epogen for red blood cell stabilization and we're just waiting it out right now, trying to keep him comfortable and trying to figure out what's caused the left arm weakness in motor skills. Right arm is still swollen and the blood clod hasn't dissolved, but because they can't put him on blood-thinners, they expect that it may take some time to correct itself. His appetite is waning, partly because of the fevers and somewhat from the general crumminess of the chemo, but I went out and got him a pepperoni pizza and he ate 2 small pieces last night and had bites of food here and there over the weekend. The dietician brought us some alternate menus with some slightly more appealing food selections to substitute for their regular menu, but mostly I just try and bring in something from his favorite restaurants, even if he only eats a bite or two. He's getting tired of me pestering him to eat, but I just don't want him to have to go back on the TPN if we can avoid it since it's such a breeding ground for bacteria with all the sugar, etc.
Dr. Menco and Dr. Mazur will be back today and I'm looking forward to talking to them instead of the on-call people covering the weekend. I'll let you know when something newsworthy comes up, which may be a day or two. It's likely we're just in a wait and see mode until the after-effects of this recent aggressive chemo have subsided. Cards would be awesome, but visitors are still restricted until his white count is above 2.0. Thanks. Hope you all had a wonderful weekend!
Dr. Menco and Dr. Mazur will be back today and I'm looking forward to talking to them instead of the on-call people covering the weekend. I'll let you know when something newsworthy comes up, which may be a day or two. It's likely we're just in a wait and see mode until the after-effects of this recent aggressive chemo have subsided. Cards would be awesome, but visitors are still restricted until his white count is above 2.0. Thanks. Hope you all had a wonderful weekend!
Friday, May 13, 2011
9:30 AM Friday, May 13, 2011
Wanted to quickly update the blog since I didn't get to it yesterday. Wednesday night ended up being a little rough - Ed's fever kept spiking over 103 and it was an ongoing battle to find a window of time to get the blood & platelet transfusions done and also to get him moved to the oncology floor. Ed started feeling really lousy with nausea, chills, etc. around 8 PM and had a couple of really rough bouts of rigors. I finally went home around 1 AM Thursday and the nurse called me at 5:30 AM to tell me they were moving him to oncology. I went to the office early and then got back to the hospital late morning with some lunch for him and to wait for the doctors. I noticed that Ed had some significant weakness in his left arm as he had trouble holding a cup of water and getting it back onto the rolling tray, and also that the swelling in his right arm had become much more noticeable. When Dr. Menco came in, he re- assessed Ed and ordered some additional tests. An ultrasound of his right arm revealed a blood clot near the site of the PICC line. Dr. Menco also saw the weakness in his left arm and ordered a CT brain scan to rule out a possible bleed related to his platelets being so low (they were at 5). His fevers have been spiking but the CT scan showed no evidence of a stroke or bleed, so that was reassuring. He continues to have pain in his bones and especially left shoulder but his arm seems less shaky this morning. It was a long night of fevers, rigors, headaches, nausea, ice packs and blood tests every few hours, but finally this morning around 6:30 they were able to get another bag of platelets into him, which meant they could take out the PICC line (to let the blood clot dissolve) which they didn't want to do until the platelets were in because of the bleeding risk. Now today he will get more blood and hopefully get off of the oxygen, which he's needed because his hemoglobin was so low. His whites went back down to zero today after going up a little yesterday, but he's on 3 IV antibiotics now, so hopefully no new infections will take hold. Ed's feeling pretty distressed about being so sick this time around, but he did get a bigger dose of chemo this last time. Hopefully he's on the upswing now and will gain some good ground today.
I'm signing off to get some sleep for a couple of hours. He was sleeping pretty soundly when I came home a little bit ago and he has one of our favorite nurses today, so I'm grabbing the chance to collapse for a bit. I'll update later tonight. The plan is for him to be there at least through the weekend to get back on track. We're looking forward to rising counts and less nausea so his appetite will come back as well.
I'm signing off to get some sleep for a couple of hours. He was sleeping pretty soundly when I came home a little bit ago and he has one of our favorite nurses today, so I'm grabbing the chance to collapse for a bit. I'll update later tonight. The plan is for him to be there at least through the weekend to get back on track. We're looking forward to rising counts and less nausea so his appetite will come back as well.
Wednesday, May 11, 2011
2:00 Wednesday May 11, 2011
Well, the fever fairy did not skip our house this time as we had hoped. Last night about 10:30 Ed started feeling really awful - uncontrollable shaking (rigors), chills, nausea and the whole nine yards. I took his temperature and it was 100.4, a few minutes later it was 100.9, a few minutes later it was 101.5 and we realized we were in for it. He really didn't want me to call the doctor, but by a few minutes past 11 PM, his fever was 101.9 and Dr. Menco told us to go to the ER. We packed a bag and left. By the time we drove to the hospital (about a mile away) his fever was 102.9 and of course they admitted him and started antibiotics right away.
They moved him to a room on a surgical floor about 3 AM (we were both sleeping on the gurney so they let me ride too!) and we got settled and then slept for another hour before all the rounds start about 5:30 AM with taking blood, etc. His white count is down to .1 again and his platelets and hemoglobin are also below the threshhold, so this afternoon will be busy with blood and platelet infusions and IV antibiotics. They are planning to move him back to the oncology ward as soon as a bed becomes available (probably later today) and then Dr. Mazur (infectious disease expert) will be in later tonight or tomorrow AM to consult. (Dr. Mazur is playing golf today and Ed is actually pretty stable at this time, so we'll give the doc a break.)
Don't know how long this round of in-patient will be, but Ed has a project to work on this time and I'm at the office gathering the supplies now. He plans to work on a bid/estimating template manual that he's wanted to do for a long time for the business. I'm so happy he has a project - guess I'll keep the crochet hook and yarn for myself. I gotta run cause he wants a Big Mac and fries for lunch after the disappointing (duh!) lunch tray that arrived. Gotta keep his weight up.....and McDonalds is just what the doctor ordered! Really.....it is! Around 4 PM we'll have ice cream bars from the cafeteria! Hopefully his weight gain will outpace mine!
When I know more.....I'll fill you in. Just know he's feeling pretty good right now, in spite of the nasty bacteria that seem to enjoy swimming around in his blood!
They moved him to a room on a surgical floor about 3 AM (we were both sleeping on the gurney so they let me ride too!) and we got settled and then slept for another hour before all the rounds start about 5:30 AM with taking blood, etc. His white count is down to .1 again and his platelets and hemoglobin are also below the threshhold, so this afternoon will be busy with blood and platelet infusions and IV antibiotics. They are planning to move him back to the oncology ward as soon as a bed becomes available (probably later today) and then Dr. Mazur (infectious disease expert) will be in later tonight or tomorrow AM to consult. (Dr. Mazur is playing golf today and Ed is actually pretty stable at this time, so we'll give the doc a break.)
Don't know how long this round of in-patient will be, but Ed has a project to work on this time and I'm at the office gathering the supplies now. He plans to work on a bid/estimating template manual that he's wanted to do for a long time for the business. I'm so happy he has a project - guess I'll keep the crochet hook and yarn for myself. I gotta run cause he wants a Big Mac and fries for lunch after the disappointing (duh!) lunch tray that arrived. Gotta keep his weight up.....and McDonalds is just what the doctor ordered! Really.....it is! Around 4 PM we'll have ice cream bars from the cafeteria! Hopefully his weight gain will outpace mine!
When I know more.....I'll fill you in. Just know he's feeling pretty good right now, in spite of the nasty bacteria that seem to enjoy swimming around in his blood!
Tuesday, May 10, 2011
4 PM Tuesday May 10, 2011
Ed's had a day of racing the "nader" clock......actually drove his hot rod today from Camarillo to Thousand Oaks and back to Camarillo. The interior isn't done, but he was happy to just be behind the wheel of the beast and feel the power. (I think it probably cured his epididimitis!) We went to Dr. Menco and had blood drawn an hour ago - whites are down to .9 and platelets are pretty dang low too, so after his "one more thing to do - camera a sewer line", he plans to go home -- hopefully to wash his hands thoroughly! Thereafter he is to plop himself in the sanitized recliner and stay put until the blood counts are back up - could be upwards of a week I'm afraid.
We go back in 48 hours to test his blood again - Dr. Menco feels that this is the beginning of the crash, and if his counts are any lower on Thursday, he'll put Ed in Los Robles Hospital and start giving him platelet and blood infusions as well as the antibiotics. Its crummy to be hospitalized again, but much better than waiting for an infection to take hold and ultimately spend more days trying to get rid of it and lose ground with the weight gain, eating etc. NOBODY gains weight eating hospital food!
Ed is currently under strict instructions to eat at least 2 bowls of Haagen Daaz a day along with between meal snacks of donuts (he ate 2 today) and cheesecake, and any other fattening food to be had. Maybe I'll light up the fire pit in the backyard and make s'Mores tonight!
That's all the news for now. I'll let you know how my little captive is doing tomorrow. I have plenty of Zoloft, Ativan and Dilaudid to subdue him if necessary, and permission from the doctor to do so, although I haven't actually decided which one of us I'll medicate! I have a 40% off coupon for Joann Fabrics and I just may use it to get him some yarn and a crochet hook (which hopefully won't end up in my left temple!) Knitting is out because it requires both hands, and all men know that ONE hand must be kept free at all times for the remote control. If I could just find a channel with 24-hour O'Reilly re-runs..........
P.S. - Sorry about the semi-obscure "nader" reference. Nothing to do with Corvairs or Ralph.......just the term that is used in the oncology world to describe the physical low point a person hits post-chemo.
Enjoy your evening. It's Taco Tuesday at El Torito and I'd appreciate it if someone out there would have a margarita for me.......rocks, no salt. Thanks!
We go back in 48 hours to test his blood again - Dr. Menco feels that this is the beginning of the crash, and if his counts are any lower on Thursday, he'll put Ed in Los Robles Hospital and start giving him platelet and blood infusions as well as the antibiotics. Its crummy to be hospitalized again, but much better than waiting for an infection to take hold and ultimately spend more days trying to get rid of it and lose ground with the weight gain, eating etc. NOBODY gains weight eating hospital food!
Ed is currently under strict instructions to eat at least 2 bowls of Haagen Daaz a day along with between meal snacks of donuts (he ate 2 today) and cheesecake, and any other fattening food to be had. Maybe I'll light up the fire pit in the backyard and make s'Mores tonight!
That's all the news for now. I'll let you know how my little captive is doing tomorrow. I have plenty of Zoloft, Ativan and Dilaudid to subdue him if necessary, and permission from the doctor to do so, although I haven't actually decided which one of us I'll medicate! I have a 40% off coupon for Joann Fabrics and I just may use it to get him some yarn and a crochet hook (which hopefully won't end up in my left temple!) Knitting is out because it requires both hands, and all men know that ONE hand must be kept free at all times for the remote control. If I could just find a channel with 24-hour O'Reilly re-runs..........
P.S. - Sorry about the semi-obscure "nader" reference. Nothing to do with Corvairs or Ralph.......just the term that is used in the oncology world to describe the physical low point a person hits post-chemo.
Enjoy your evening. It's Taco Tuesday at El Torito and I'd appreciate it if someone out there would have a margarita for me.......rocks, no salt. Thanks!
Monday, May 9, 2011
Noon Monday, May 9th, 2011
We made it through the weekend at home! Pretty quiet for Ed as he's trying to keep his engine in "idle" mode - a significantly bigger task for him than zero to a hundred in 9 seconds! He felt relatively decent for a guy who just had a really aggressive chemo treatment - the comfort meds definately help, along with his "tough-it-out" persona..... The white count drop-off period pattern starts this week, so we're happy he's made it this far and we'll go to Dr. Menco tomorrow to have blood work done and decide how to proceed if he looks like he's in danger of an infection again. I know he's dreading the next few days of wait and worry, but its really all we can do.
Ed's cousin Kathy came out from Colorado with her daughter Heidi and surprised us yesterday - what an unexpected treat to have them come all this way to visit! Kathy has some first hand experience with some of the medical issues Ed is working through, and I know he finds it really comforting and informative to talk with her. She has been so willing to share with him on a different level than the "vacuum-sealed" information that is gleaned from reading medical websites and journals. Its always more personal and helpful to have someone who has walked in the same shoes to explain things and provide helpful insight and perspective. A gift for sure.
Belated Happy Mother's Day to all of you who are Moms-in-fact, or Moms-in-kind as defined by the motherly deeds you do. I'm sure we all know some single dads who deserve to be wished a Happy Mother's Day and vice versa. Hope it was a day full of flowers, smiles and some rest. I was able to spend Saturday with my older daughters and tribe of grandkids and Sunday we had Ed's mom for brunch and then my younger kids took me out to dinner. It was wonderful.
Lots to do today after the list of tasks I discussed with the stem cell coordinator on Friday, and time is ticking by quickly. Quite a few phones calls and logistics to arrange, insurance info to be nailed down and day-planner notes to record, so I'll get back to it. If I don't have a chance to update the blog before Ed's appointment tomorrow, I'll let you know later on Tuesday how that goes.
Ed's cousin Kathy came out from Colorado with her daughter Heidi and surprised us yesterday - what an unexpected treat to have them come all this way to visit! Kathy has some first hand experience with some of the medical issues Ed is working through, and I know he finds it really comforting and informative to talk with her. She has been so willing to share with him on a different level than the "vacuum-sealed" information that is gleaned from reading medical websites and journals. Its always more personal and helpful to have someone who has walked in the same shoes to explain things and provide helpful insight and perspective. A gift for sure.
Belated Happy Mother's Day to all of you who are Moms-in-fact, or Moms-in-kind as defined by the motherly deeds you do. I'm sure we all know some single dads who deserve to be wished a Happy Mother's Day and vice versa. Hope it was a day full of flowers, smiles and some rest. I was able to spend Saturday with my older daughters and tribe of grandkids and Sunday we had Ed's mom for brunch and then my younger kids took me out to dinner. It was wonderful.
Lots to do today after the list of tasks I discussed with the stem cell coordinator on Friday, and time is ticking by quickly. Quite a few phones calls and logistics to arrange, insurance info to be nailed down and day-planner notes to record, so I'll get back to it. If I don't have a chance to update the blog before Ed's appointment tomorrow, I'll let you know later on Tuesday how that goes.
Friday, May 6, 2011
5 PM Friday May 6, 2011
Well, we got home last night after a long drive in traffic. Stopped to have some dinner, then pharmacy and home. Ed had spaghetti & meatballs which he enjoyed and then he had his first night of tube-free sleeping without the TPN since February 13th! Ed started feeling the effects of the chemo last night and today, but came into the office this morning for a bit and ran some "hot rod" errands. Trying to beat the swan dive of white cells that we expect after every chemo.
His white count is still pretty good but he really started feeling crummier by this afternoon (a true medical term). We went to Dr. Menco at 2 this afternoon for Ed's Neupagen shot and we discussed some strategies for keeping him "safe" during this next week and a half of neutropenic exposure. Depending on his counts, Dr. Menco said he may just hospitalize him as a precaution, but meanwhile, we'll try and get through the weekend. Luckily, Dr. Menco is on call this weekend if we need him, so that feels reassuring. We learned that Ed received a 50% stronger dose of the ARA-C this time than the last time we were at UCLA, so he's probably going to feel the effects a little more acutely, but we have lots of tools to manage that - all of them in little brown bottles with white caps......no not Coors Light!
Must get home so I'll run for now.....back tomorrow with more blogging. Enjoy your Friday night!
His white count is still pretty good but he really started feeling crummier by this afternoon (a true medical term). We went to Dr. Menco at 2 this afternoon for Ed's Neupagen shot and we discussed some strategies for keeping him "safe" during this next week and a half of neutropenic exposure. Depending on his counts, Dr. Menco said he may just hospitalize him as a precaution, but meanwhile, we'll try and get through the weekend. Luckily, Dr. Menco is on call this weekend if we need him, so that feels reassuring. We learned that Ed received a 50% stronger dose of the ARA-C this time than the last time we were at UCLA, so he's probably going to feel the effects a little more acutely, but we have lots of tools to manage that - all of them in little brown bottles with white caps......no not Coors Light!
Must get home so I'll run for now.....back tomorrow with more blogging. Enjoy your Friday night!
Thursday, May 5, 2011
11 AM Thursday, May 5, 2011
Ed is dong well this morning......overnight chemo went well and he's still feeling okay - a little funky but nothing major, thankfully. He thinks they are pushing the last chemo dose to earlier today, so he will probably be ready to come home earlier than expected. Waiting to see what time they will do the bone marrow biopsy today and then he should be discharged.
He's anxious to come home as always, so I'll let you know when he's safe and sound back in T.O. Should be a beautifully sunny weekend for some porch sittin' (if I can keep him on that post-chemo leash).
Keeping it short for now after yesterday's ramblings...... thanks for bearing with me through my stream of consciousness.....
He's anxious to come home as always, so I'll let you know when he's safe and sound back in T.O. Should be a beautifully sunny weekend for some porch sittin' (if I can keep him on that post-chemo leash).
Keeping it short for now after yesterday's ramblings...... thanks for bearing with me through my stream of consciousness.....
Wednesday, May 4, 2011
5 PM Wednesday, May 4, 2011
Well, here goes with what I hope will be a "Reader's Digest" kind of condensed dose of the information overload of the past 24 hours! I have an hour to condense it down while Ed is busy.....yes, watching The Factor on Fox. I've learned to tune out the sound of all that arguing over Pinheads and Patriots and especially the sound of Hannity........just too much audio chaos for me on a regular basis, especially at the end of a busy day.
The chemo is going well - they just started Ed on # 2 of 4 doses scheduled for this round at UCLA. He spent a good portion of the afternoon in radiology having an echocardiogram, an ultrasound of his right leg to check on the previously identified blood clots, and an x-ray of his heart - all part of the pre-screening tests that need to be done within 8 weeks of starting the stem-cell process. All painless but annoying procedures that we're trying to get done while he's already here and save a trip on the 405 Freeway next week. Tomorrow he may need a bone marrow biopsy, which can be pretty painful, but we heard about a nurse practioner here who is really good at it and very gentle, so we've requested her specifically. So far, Ed's counts are good and he's feeling pretty good, a much different experience than the past 3 chemos. Much more manageable and less anxiety filled.
I've been reading my big binder - which I've affectionately subtitled Stem Cell Transplants for Dummies - it's quite thorough and describes the process, the risks and benefits, the logistical details that need to be addressed and contains samples of all the consent forms, research links, support group info, etc. Kind of a "What to expect when you're expecting" type of guide to the world of stem cell transplantation. We have about 5 weeks before the intense activity begins and then it will be pretty intense through the end of summer. The stem cell retreival is done out-patient in a building next door to the hospital here and takes 3-5 days, about 4-6 hours a day on a machine that draws blood out of one arm, spins through a blood separator, spins off the stem cells, and then returns the blood through the other arm. We will have to drive here each day for that. Then he will be admitted and given super high-dose chemo for 5 days in a row, a day of rest and then the stem cell infusion, which takes one day. Then begins the waiting - about 2-3 more weeks - for the stem cells to engraft in the bone and start rebuilding his immune system. Once he passes the neutropenic stage and his counts are good for several days, we will be allowed to move out of the hospital, but will still need to stay close by UCLA for about 2 weeks - probably in a hotel or housing arranged by our case manager. They want patients to be within a 30 minute drive of the hospital in case he develops an infection and we live too far away in traffic. Then once we can go home, it will be 3-6 months for his immune system to recover enough for normal activities and about 6-12 months to get completely back to normal. A long haul for sure, but a worthwhile treatment and the only option for this type of lymphoma. We are lucky to live near a transplant facility - and for Ed to get into the program. They only accept about 200 stem cell patients a year! More details as I get more familiar, but that's the long and short of it for now.
Dr. DeVos came by today and told us that because Ed is eating more regularly, he is going to stop the TPN and see if Ed's digestive absorption is functioning at a level that will allow him to discontinue that for now. Yeah!!! They will know from his pre-albumen blood level how that's going, so Ed is very excited to have one less tether and tube.
Ed is ernestly eating his dinner so he can get to his dessert of chocolate cake and vanilla ice cream. The food service here at UCLA is an upgrade compared to most institutional food experiences. At any time of day, patients can peruse their "Signature Dining" Room Service guide where the "mission statement" is simply stated: Our goal is to provide you with healthful foods that also taste good. Our clinical staff is available to assist you in tailoring these items to your specific needs. A lovely greeting filled with such promise. The patient then presses a button on the display terminal of the room telephone labeled "Food Service" where you are connected to a "Signature Dining" wait staff member who notes your menu selections and confirms your excellent choices. (After all, this IS the Ronald Reagan UCLA Medical Center, but just between you and me, I'm pretty sure Ronnie and Nancy never ate here.) Your personal waiter delivers your food tray dressed in a modified tuxedo uniform complete with bow tie and cumberbund, sets the tray down and politely retreats from the room before you can raise the requisite plastic dome and confront a plate of neutral colored food that closely resembles the beige shade of upholstery in every government-issued fleet vehicle produced by GM in the 1960s. Adding insult to injury, the "Signature Chef" has added his secret spice mix of antiseptic dishwater and melmac to each food item just for your dining pleasure. I heard a rumor that Schilling is working on copying the formula, though I seriously doubt Emeril Lagasse is quivering in his cajun chef clogs! Needless to say, I firmly believe that were they to engage the services of an independent market research team, an unbiased committee of captive patients would demand a retraction of the menu greeting, citing false advertising. Delicious hospital food? A mission even the Navy Seals probably couldn't accomplish, and still holding a solid #1 spot on the Top 10 Most Elusive Things in the World list.
Signing off from my missive, which I hope has brought some insomnia or comedic relief to those of you "blogging" before bed.
The chemo is going well - they just started Ed on # 2 of 4 doses scheduled for this round at UCLA. He spent a good portion of the afternoon in radiology having an echocardiogram, an ultrasound of his right leg to check on the previously identified blood clots, and an x-ray of his heart - all part of the pre-screening tests that need to be done within 8 weeks of starting the stem-cell process. All painless but annoying procedures that we're trying to get done while he's already here and save a trip on the 405 Freeway next week. Tomorrow he may need a bone marrow biopsy, which can be pretty painful, but we heard about a nurse practioner here who is really good at it and very gentle, so we've requested her specifically. So far, Ed's counts are good and he's feeling pretty good, a much different experience than the past 3 chemos. Much more manageable and less anxiety filled.
I've been reading my big binder - which I've affectionately subtitled Stem Cell Transplants for Dummies - it's quite thorough and describes the process, the risks and benefits, the logistical details that need to be addressed and contains samples of all the consent forms, research links, support group info, etc. Kind of a "What to expect when you're expecting" type of guide to the world of stem cell transplantation. We have about 5 weeks before the intense activity begins and then it will be pretty intense through the end of summer. The stem cell retreival is done out-patient in a building next door to the hospital here and takes 3-5 days, about 4-6 hours a day on a machine that draws blood out of one arm, spins through a blood separator, spins off the stem cells, and then returns the blood through the other arm. We will have to drive here each day for that. Then he will be admitted and given super high-dose chemo for 5 days in a row, a day of rest and then the stem cell infusion, which takes one day. Then begins the waiting - about 2-3 more weeks - for the stem cells to engraft in the bone and start rebuilding his immune system. Once he passes the neutropenic stage and his counts are good for several days, we will be allowed to move out of the hospital, but will still need to stay close by UCLA for about 2 weeks - probably in a hotel or housing arranged by our case manager. They want patients to be within a 30 minute drive of the hospital in case he develops an infection and we live too far away in traffic. Then once we can go home, it will be 3-6 months for his immune system to recover enough for normal activities and about 6-12 months to get completely back to normal. A long haul for sure, but a worthwhile treatment and the only option for this type of lymphoma. We are lucky to live near a transplant facility - and for Ed to get into the program. They only accept about 200 stem cell patients a year! More details as I get more familiar, but that's the long and short of it for now.
Dr. DeVos came by today and told us that because Ed is eating more regularly, he is going to stop the TPN and see if Ed's digestive absorption is functioning at a level that will allow him to discontinue that for now. Yeah!!! They will know from his pre-albumen blood level how that's going, so Ed is very excited to have one less tether and tube.
Ed is ernestly eating his dinner so he can get to his dessert of chocolate cake and vanilla ice cream. The food service here at UCLA is an upgrade compared to most institutional food experiences. At any time of day, patients can peruse their "Signature Dining" Room Service guide where the "mission statement" is simply stated: Our goal is to provide you with healthful foods that also taste good. Our clinical staff is available to assist you in tailoring these items to your specific needs. A lovely greeting filled with such promise. The patient then presses a button on the display terminal of the room telephone labeled "Food Service" where you are connected to a "Signature Dining" wait staff member who notes your menu selections and confirms your excellent choices. (After all, this IS the Ronald Reagan UCLA Medical Center, but just between you and me, I'm pretty sure Ronnie and Nancy never ate here.) Your personal waiter delivers your food tray dressed in a modified tuxedo uniform complete with bow tie and cumberbund, sets the tray down and politely retreats from the room before you can raise the requisite plastic dome and confront a plate of neutral colored food that closely resembles the beige shade of upholstery in every government-issued fleet vehicle produced by GM in the 1960s. Adding insult to injury, the "Signature Chef" has added his secret spice mix of antiseptic dishwater and melmac to each food item just for your dining pleasure. I heard a rumor that Schilling is working on copying the formula, though I seriously doubt Emeril Lagasse is quivering in his cajun chef clogs! Needless to say, I firmly believe that were they to engage the services of an independent market research team, an unbiased committee of captive patients would demand a retraction of the menu greeting, citing false advertising. Delicious hospital food? A mission even the Navy Seals probably couldn't accomplish, and still holding a solid #1 spot on the Top 10 Most Elusive Things in the World list.
Signing off from my missive, which I hope has brought some insomnia or comedic relief to those of you "blogging" before bed.
9:30 AM Wednesday, May 4, 2011
Just a quick note before I dash off back to UCLA.
Ed got checked-in and situated yesterday afternoon with much less kafuffle than our previous experience. The stem cell transplant coordinator came by and introduced herself.....so begins the odyssey of the stem cell transplant world. Overwhelming for sure - she presented us with a big binder full of info and consent forms to review, lots of details to be worked out and questions to be asked and answered. We will have several more meetings in the next couple of weeks and it looks like the process of harvesting and transplant will start mid-June.
They finally got Ed's chemo started around midnight (several tests needed to be done first as well as the Rituxan and the pre-chemo meds). I got home around 2 AM so I could be in he office for payroll Wednesday and now I'm heading back down to UCLA. The stem cell doctor will be there at 11 AM so I'm rushing off. Talked to Ed this morning early and he did well through the night and slept between infusions with very little discomfort and no unexpected reactions. All is well so far.
I'll post a much longer update later today with info on the stem cell situation. Just wanted to let you all know he's doing really well right now. Thanks for the messages, calls, thoughts and prayers.
Ed got checked-in and situated yesterday afternoon with much less kafuffle than our previous experience. The stem cell transplant coordinator came by and introduced herself.....so begins the odyssey of the stem cell transplant world. Overwhelming for sure - she presented us with a big binder full of info and consent forms to review, lots of details to be worked out and questions to be asked and answered. We will have several more meetings in the next couple of weeks and it looks like the process of harvesting and transplant will start mid-June.
They finally got Ed's chemo started around midnight (several tests needed to be done first as well as the Rituxan and the pre-chemo meds). I got home around 2 AM so I could be in he office for payroll Wednesday and now I'm heading back down to UCLA. The stem cell doctor will be there at 11 AM so I'm rushing off. Talked to Ed this morning early and he did well through the night and slept between infusions with very little discomfort and no unexpected reactions. All is well so far.
I'll post a much longer update later today with info on the stem cell situation. Just wanted to let you all know he's doing really well right now. Thanks for the messages, calls, thoughts and prayers.
Monday, May 2, 2011
11:30 AM Monday May 2, 2011
Just a quick note to let you know that UCLA called with news that the chemo is scheduled for Tuesday as soon as a bed becomes available, so we'll be packing and on stand-by starting tomorrow morning. Rushing to get as much done as possible today at the office and Ed is home working on some plumbing repair for the pool. He has help, so hopefully he won't exhaust himself. I know he's just really enjoying being in the sunshine today.
He's feeling really good - this is the best he's felt facing a chemo session, so that should make the whole experience less traumatic than the previous ones. A nice change for sure.
I'll post sometime tomorrow evening after we're settled - I know it will be a bit of a process getting there, going through the admission, set-up and getting the pre-chemo drugs done. After that, there's usually some waiting time where I'll have a chance to get to the blog.
Meanwhile, have a great day!
He's feeling really good - this is the best he's felt facing a chemo session, so that should make the whole experience less traumatic than the previous ones. A nice change for sure.
I'll post sometime tomorrow evening after we're settled - I know it will be a bit of a process getting there, going through the admission, set-up and getting the pre-chemo drugs done. After that, there's usually some waiting time where I'll have a chance to get to the blog.
Meanwhile, have a great day!
Sunday, May 1, 2011
10 PM Sunday, May 1, 2011
My gosh, it's May Day and we haven't even danced around the May Pole yet! I know, I know....the pole thing again. Seems like a popular theme for many a "slow-news on the blog front" day, but today it's obviously more appropriate to go back to the Bin Laden theme! Amazing that the very same thing that took away takes away Ed's pain, may just take away the PRESIDENT'S pain........ well, at least his painfully low approval ratings. Good timing, along with the stroke of genius to get a court-order for the sister's brain to check the DNA match! Interesting world we live in.
We will now return to our local programming...........Ed and Tyler are at the movies tonight - that Five something movie of "Fast & Furious" phenom fame..... I decided to stay home and pursue a much more relaxing and satisfying pastime. I'm still deciding between rotating the wheels on the refrigerator or stubbing my toe on purpose, both of which are higher on my list of "things I like to do" than going to a movie strictly dedicated to crashing cars. Must be a chick thing.... Actually I'm planning to sit in the steam shower, leisurely floss my teeth with cavalier abandon and then fire up my Kindle. It's a madcap life I lead.
Went to a 40th birthday party last night and had great time being out and about again. Great musical entertainment - Aaron sang with "No Bueno" (name of the band), but they actually were bueno......very bueno in fact. It was really good to see so many friends and have a chance to catch up in person. We were home in bed by midnight, which is not exactly our normal "howlin' at the moon" mode, but maybe this is just practice for when we really do get old - something our kids keep telling us is bound to happen. (Lately the mirror seems to be agreeing with them!)
This morning Ed went down to the car show in Camarillo - his car was there - and then we spent the day with Tyler before he had to go to work for a few hours. It was such a peaceful and normal day - a wonderful contrast to the past couple of months. Truly enjoyed sitting in the kitchen with pancakes and OJ this morning.
We are expecting a call from UCLA tomorrow to arrange the chemo in the next day or two, and I'll keep you posted about the status of that. Ed is feeling much stronger for this round than for any of the previous chemotherapies, so we're optimistic for a smooth hospital stay and quiet post-chemo week of infection-free recovery. Keep your fingers and toes crossed for him and I'll keep you updated on his progress.
And now, not necessarily paying homage to the current world events, I'll go spend the next half an hour as a towel-head, enjoying the steam shower. ( I'm pretty sure it will be a more attractive choice of head wear than the "what on EARTH was she thinking" hat (and I use the term loosely) worn by Princess Beatrice at the wedding on Friday!) Google it for a laugh.... seriously! What could that possibly have been about??????? She clearly must have lost a bet ........
Good night and Happy May Day!
We will now return to our local programming...........Ed and Tyler are at the movies tonight - that Five something movie of "Fast & Furious" phenom fame..... I decided to stay home and pursue a much more relaxing and satisfying pastime. I'm still deciding between rotating the wheels on the refrigerator or stubbing my toe on purpose, both of which are higher on my list of "things I like to do" than going to a movie strictly dedicated to crashing cars. Must be a chick thing.... Actually I'm planning to sit in the steam shower, leisurely floss my teeth with cavalier abandon and then fire up my Kindle. It's a madcap life I lead.
Went to a 40th birthday party last night and had great time being out and about again. Great musical entertainment - Aaron sang with "No Bueno" (name of the band), but they actually were bueno......very bueno in fact. It was really good to see so many friends and have a chance to catch up in person. We were home in bed by midnight, which is not exactly our normal "howlin' at the moon" mode, but maybe this is just practice for when we really do get old - something our kids keep telling us is bound to happen. (Lately the mirror seems to be agreeing with them!)
This morning Ed went down to the car show in Camarillo - his car was there - and then we spent the day with Tyler before he had to go to work for a few hours. It was such a peaceful and normal day - a wonderful contrast to the past couple of months. Truly enjoyed sitting in the kitchen with pancakes and OJ this morning.
We are expecting a call from UCLA tomorrow to arrange the chemo in the next day or two, and I'll keep you posted about the status of that. Ed is feeling much stronger for this round than for any of the previous chemotherapies, so we're optimistic for a smooth hospital stay and quiet post-chemo week of infection-free recovery. Keep your fingers and toes crossed for him and I'll keep you updated on his progress.
And now, not necessarily paying homage to the current world events, I'll go spend the next half an hour as a towel-head, enjoying the steam shower. ( I'm pretty sure it will be a more attractive choice of head wear than the "what on EARTH was she thinking" hat (and I use the term loosely) worn by Princess Beatrice at the wedding on Friday!) Google it for a laugh.... seriously! What could that possibly have been about??????? She clearly must have lost a bet ........
Good night and Happy May Day!
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