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!
Monday, May 16, 2011
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!
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