The Alimta was not working as well as it should. It has been discontinued. Her CA-125 level has been slowly increasing and the PET scan showed signs of increased growth. Her blood clots and the anticoagulation factor discovered in a previous blood test are a direct result of her cancer. The hope is to find a drug or drug combination that will stop her cancer from progressing. Lucy still have chemotherapy options available.
The new drug is Hexalen, an oral chemotherapy drug. Lucy will be taking it every day for two weeks, then get two weeks off. She will need weekly blood tests because of her clotting problem and the fact her blood counts were generally low because of the previous rounds of chemo. Her next blood test is a week from today, and it can be a port draw. That will give her arms a chance to recover from all the pokes she received in the hospital.
Her hemoglobin was still at 8.1, so that was a good sign. Her white count and platelet count were in the normal range. Her legs are slowly getting less swollen, she is having less discomfort, and she has not had a fever spike since leaving the hospital.
We still don't know if the Pradaxa is working. There is no slam dunk blood test that will help. The drug awaiting in the wings is Arixtra, the injection drug mentioned a few posts back. The challenge will be trying to figure out if she has a clot forming. Both legs are still pink and have peeling skin on them. It will be tough to spot the tell tale erythema (rash) or streaks from a forming blood clot. As I have mentioned, Homans' sign is wrong a lot, and Pratt's sign doesn't seem to be any better. If Lucy's leg pain starts increasing or if she starts having fever spikes, we're going to get her in for an ultrasound.
We're both frustrated and disappointed right now. It's been hard trying to find the bright spots in today's events. The biggest bright spot we have is your compassion. Thank you for that, it helps us through these rough patches.
Showing posts with label dvt. Show all posts
Showing posts with label dvt. Show all posts
Monday, March 12, 2012
Monday, March 5, 2012
Home and resting comfortably
We were concerned Lucy would have to be held another day. She had a fever spike last night of 101.4°F which took about an hour to break even with Tylenol. That was the last spike. This morning she took her antibiotic (Augmentin) and her Pradaxa on an empty stomach. After some mild nausea and a shot of Zofran she was fine.
Dr. Dittes came by to tell Lucy that he was confident her symptoms were clot related, not infection related. He wants her on Augmentin for 10 days and saw no reason for her to spend more time in the hospital.
Dr. Weinshal was rounding for Dr. Thurmes and got delayed. Lucy's hemoglobin was at 8.6, her pain was manageable, and she had no fever spikes today. He saw no reason to keep her in the hospital any longer.
The only snag came when Fairview's pharmacy thought they would be filling the Pradaxa prescription even though it was called into our local Walgreens. That took a while to get straightened out. Fairview's pharmacy is out of network so there is a much higher co-pay.
Lucy will get a couple days of downtime. Her next oncologist appointment and Alimta treatment is Thursday. I believe she will also be due for a vitamin B12 injection
We're both hoping for a quiet boring week for Lucy. She will need a couple days to decompress. For the first time in 9 nights she gets to sleep in her own bed. She won't be awakened every two hours and won't be listening to medical equipment.
Thank you for your love, thoughts and prayers! It helps get us through the rough spots. There may not be another post until Thursday.
Dr. Dittes came by to tell Lucy that he was confident her symptoms were clot related, not infection related. He wants her on Augmentin for 10 days and saw no reason for her to spend more time in the hospital.
Dr. Weinshal was rounding for Dr. Thurmes and got delayed. Lucy's hemoglobin was at 8.6, her pain was manageable, and she had no fever spikes today. He saw no reason to keep her in the hospital any longer.
The only snag came when Fairview's pharmacy thought they would be filling the Pradaxa prescription even though it was called into our local Walgreens. That took a while to get straightened out. Fairview's pharmacy is out of network so there is a much higher co-pay.
Lucy will get a couple days of downtime. Her next oncologist appointment and Alimta treatment is Thursday. I believe she will also be due for a vitamin B12 injection
We're both hoping for a quiet boring week for Lucy. She will need a couple days to decompress. For the first time in 9 nights she gets to sleep in her own bed. She won't be awakened every two hours and won't be listening to medical equipment.
Thank you for your love, thoughts and prayers! It helps get us through the rough spots. There may not be another post until Thursday.
Sunday, March 4, 2012
And the winner is...
Pradaxa (the pills)!
Dr. Thurmes told us that Lucy will be going on Pradaxa twice per day for her clotting problems. He wanted something with a shorter half-life in case she starts getting the serious nosebleeds again. Pradaxa has been approved for DVT therapy in cancer patients in Europe. FDA approval is pending, but it can be legally prescribed for Lucy's situation.
Lucy's hemoglobin was at 7.2 and she received a one unit transfusion. Her IVs are disconnected. She had two long walks today while still tethered to the IV tree. Her longest walk came after untethering.
As of right now, the only thing that would keep her in the hospital is a fever spike higher than 101.5° tonight. Her pain management is fine. She started her oral antibiotic. That will be twice per day for a week starting tomorrow. The pills are very large uncoated capsules, so we will split them so she has an easier time swallowing them.
Lucy heard from Steve, Julie and Suzy today so she got to tell them about her imminent release. The nice thing is the pace here has slowed down.
Dr. Thurmes told us that Lucy will be going on Pradaxa twice per day for her clotting problems. He wanted something with a shorter half-life in case she starts getting the serious nosebleeds again. Pradaxa has been approved for DVT therapy in cancer patients in Europe. FDA approval is pending, but it can be legally prescribed for Lucy's situation.
Lucy's hemoglobin was at 7.2 and she received a one unit transfusion. Her IVs are disconnected. She had two long walks today while still tethered to the IV tree. Her longest walk came after untethering.
As of right now, the only thing that would keep her in the hospital is a fever spike higher than 101.5° tonight. Her pain management is fine. She started her oral antibiotic. That will be twice per day for a week starting tomorrow. The pills are very large uncoated capsules, so we will split them so she has an easier time swallowing them.
Lucy heard from Steve, Julie and Suzy today so she got to tell them about her imminent release. The nice thing is the pace here has slowed down.
Saturday, March 3, 2012
One small step for Lucy...
She still hasn't had the giant leap towards going home. Dr. Rousey (hematologist) stopped by this morning. He and Dr. Thurmes are still digging though research studies to see if Pradaxa will be the drug of choice, with Arixta as the runner up. Pradaxa apparently has a shorter half-life which is helpful in case of a complication. Lucy likes the fact that it is oral rather than an injection (OK, so do I!). Neither drug will require as frequent blood testing as Coumadin. I think it is because both drugs are tailored to manage specific coagulation factors while Coumadin takes more of a scorched earth approach?
The IV antibiotics are still going. Right now she gets Vancocin and ampicillin, and both are available orally. While the hematologists are researching Pradaxa, Lucy is still on IV heparin. She has not needed a blood test because she hit therapeutic range.
Julie stopped by this afternoon and really made Lucy's day! It was nice having nearly no interruptions while Julie was here.
Lucy took two walks today. The first was about 50 feet. Her second was close to 150 feet. She would go farther if the damned IVs were done. Her left ankle is loosening up a little. On her second walk, she was able to get her heel on the floor while walking, at least for a few steps. There was still discomfort walking, but she did not get wiped out afterwards. Like last time, her pain started decreasing when she sat down.
Dr. Thurmes will be on rounds tomorrow and said he will stop by. He's been so good to Lucy through this ordeal. He might have the home care anticoagulant and antibiotic choices tomorrow. If so, she will probably be released tomorrow.
The IV antibiotics are still going. Right now she gets Vancocin and ampicillin, and both are available orally. While the hematologists are researching Pradaxa, Lucy is still on IV heparin. She has not needed a blood test because she hit therapeutic range.
Julie stopped by this afternoon and really made Lucy's day! It was nice having nearly no interruptions while Julie was here.
Lucy took two walks today. The first was about 50 feet. Her second was close to 150 feet. She would go farther if the damned IVs were done. Her left ankle is loosening up a little. On her second walk, she was able to get her heel on the floor while walking, at least for a few steps. There was still discomfort walking, but she did not get wiped out afterwards. Like last time, her pain started decreasing when she sat down.
Dr. Thurmes will be on rounds tomorrow and said he will stop by. He's been so good to Lucy through this ordeal. He might have the home care anticoagulant and antibiotic choices tomorrow. If so, she will probably be released tomorrow.
Friday, March 2, 2012
Home on Sunday?
Diane visited Lucy this morning. She always manages to cheer Lucy up and today was no different.
Lucy received some good news today. The Infectious Disease group is very comfortable that the fever spikes and redness in her leg are clot related. She is still on antibiotics. Her Heparin Factor X is at 0.29. Therapeutic range starts at 0.30.
Dr. Thurmes came by and gave her some better news. Since she will be going on either Arixtra (injection) or Pradaxa (oral), her heparin level can be close to therapeutic. Her IV heparin will be stopping soon, and she will be getting switched over to oral antibiotics. He mentioned possibly Sunday as a release date. Lucy has to be off the IVs before going home.
Lucy's left ankle is still extremely stiff. She has not tried walking with her walker yet. Maneuvering is interesting enough without having to coordinate with someone pushing the IV stand. If she gets rid of her IVs tomorrow, she will start walking around and get used to being on her feet again.
Lucy received some good news today. The Infectious Disease group is very comfortable that the fever spikes and redness in her leg are clot related. She is still on antibiotics. Her Heparin Factor X is at 0.29. Therapeutic range starts at 0.30.
Dr. Thurmes came by and gave her some better news. Since she will be going on either Arixtra (injection) or Pradaxa (oral), her heparin level can be close to therapeutic. Her IV heparin will be stopping soon, and she will be getting switched over to oral antibiotics. He mentioned possibly Sunday as a release date. Lucy has to be off the IVs before going home.
Lucy's left ankle is still extremely stiff. She has not tried walking with her walker yet. Maneuvering is interesting enough without having to coordinate with someone pushing the IV stand. If she gets rid of her IVs tomorrow, she will start walking around and get used to being on her feet again.
Thursday, March 1, 2012
March came in like a lion (in a good way)
Lucy had a very busy day with all the people in and out to check on her.
Dr. Dettis (infectious disease) was by and told her he was better than 90% certain her fevers and leg redness were solely from the clots, but he wants her to be on antibiotics for another day or two. That was reassuring for her to hear.
One of the hospital chaplins stopped by, and then Dr. Thurmes (hematologist) was by to see how she was doing. Unfortunately her hemoglobin was at 7.1 so she received one unit of blood just before going to IR. He feels the Coumadin and Lovenox are not working and had two other anticoagulants in mind. One is Pradaxa, which is a pill. The other is a once per day injection which she couldn't remember. We are hoping Pradaxa is a workable solution. Dr. Thurmes had a couple of areas he needed to research first.
Her TPA procedure was delayed because of a couple higher priority cases. She was originally scheduled for 8:30 and finally went down at 12:45. The procedure was done by 1:15. She no longer is on TPA and they can stop doing the neurological tests in another four hours. She should be able to get more sleep tonight and have fewer interruptions.
She did have to have her arm IV access changed. Getting a different one in was very problematic. Her arms have really been poked. Certain drugs cannot be administered into a port, and her antibiotics are all incompatible with heparin.
Julie called tonight and like last night didn't get much time to talk to Lucy. The arm access IV adventure was just beginning.
Lucy got to sit on the edge of the bed for over a half hour. She even managed to stand up before getting back into bed. Tomorrow she will get out of bed and go for some short walks.
Getting the TPA catheter removed is a step towards going home. The next two steps are getting her off IV heparin and letting her leg heal a bit more. Getting the heparin level in line will probably be the most difficult given her past experience. We still don't have a firm release date.
Keep your fingers crossed, and thank you for all the thoughts, prayers, positive energy and good wishes!
Dr. Dettis (infectious disease) was by and told her he was better than 90% certain her fevers and leg redness were solely from the clots, but he wants her to be on antibiotics for another day or two. That was reassuring for her to hear.
One of the hospital chaplins stopped by, and then Dr. Thurmes (hematologist) was by to see how she was doing. Unfortunately her hemoglobin was at 7.1 so she received one unit of blood just before going to IR. He feels the Coumadin and Lovenox are not working and had two other anticoagulants in mind. One is Pradaxa, which is a pill. The other is a once per day injection which she couldn't remember. We are hoping Pradaxa is a workable solution. Dr. Thurmes had a couple of areas he needed to research first.
Her TPA procedure was delayed because of a couple higher priority cases. She was originally scheduled for 8:30 and finally went down at 12:45. The procedure was done by 1:15. She no longer is on TPA and they can stop doing the neurological tests in another four hours. She should be able to get more sleep tonight and have fewer interruptions.
She did have to have her arm IV access changed. Getting a different one in was very problematic. Her arms have really been poked. Certain drugs cannot be administered into a port, and her antibiotics are all incompatible with heparin.
Julie called tonight and like last night didn't get much time to talk to Lucy. The arm access IV adventure was just beginning.
Lucy got to sit on the edge of the bed for over a half hour. She even managed to stand up before getting back into bed. Tomorrow she will get out of bed and go for some short walks.
Getting the TPA catheter removed is a step towards going home. The next two steps are getting her off IV heparin and letting her leg heal a bit more. Getting the heparin level in line will probably be the most difficult given her past experience. We still don't have a firm release date.
Keep your fingers crossed, and thank you for all the thoughts, prayers, positive energy and good wishes!
Wednesday, February 29, 2012
Progress by small steps, not leaps and bounds
Lucy had her TPA procedure this morning. It took less than 90 minutes. She was told they will need to repeat it tomorrow, but they made progress. She still can't get out of bed and she is to keep her leg as still as possible. Lucy seems to be in a little less discomfort today. Lucy doesn't have a firm time for tomorrow's procedure, but it could be as early as 7:30. She is really tired today because of being awakened every two hours for the last couple days, and now has at least one more night of tests.
The hospital plays "Twinkle Twinkle Little Star" when a baby is born. I swear it was playing on a continuous loop today. There is an anecdote stating more babies are born when during bad weather because of the drop in air pressure. The barometer here dropped to 29.23 early this morning and is slowly rising.
Julie called tonight, but Lucy had to get a blood draw a few minutes into the call. Lucy's arms have been poked so much she is bruised. The heparin isn't helping with that either.
We'll see how it goes tomorrow. Thank you for spending some time reading this and have a Happy Leap Day!
The hospital plays "Twinkle Twinkle Little Star" when a baby is born. I swear it was playing on a continuous loop today. There is an anecdote stating more babies are born when during bad weather because of the drop in air pressure. The barometer here dropped to 29.23 early this morning and is slowly rising.
Julie called tonight, but Lucy had to get a blood draw a few minutes into the call. Lucy's arms have been poked so much she is bruised. The heparin isn't helping with that either.
We'll see how it goes tomorrow. Thank you for spending some time reading this and have a Happy Leap Day!
Tuesday, February 28, 2012
"You put your left leg in, you put your left leg out..."
The weather was supposed to be very challenging today. The Twin Cities was under a Winter Storm Warning due to anticipated heavy snow, sleet, freezing rain and high winds. As the morning went on, the storm shifted farther to the north. The Warning was downgraded to an Advisory. As of this writing, it is raining hard. There is still a chance of freezing rain tonight and a chance of a couple inches of snow tomorrow. The day had an unexpected turn of events, but it was in our favor.
Lucy's day had an unexpected turn of events, but in her favor. Marynne from Minnesota Oncology visited with her this morning. Dr. Thurmes was unavailable this morning. Lucy's leg was improving very slowly. Dr. Nashawaty felt that since Lucy had not had a nosebleed in several days, perhaps the TPA catheter option was available.
Her next visitor was Dr. Dittes, an Infections Disease specialist. He felt that Lucy may have celluitis but acknowledged to her that her blood cultures and blood tests show no obvious indication of a bacterial infection. He also told her that her blood clots could be the majority of the fever spikes and redness. He changed the antibiotic she was on to two different IV antibiotics. There is nothing to be concerned about.
Marynne came back a bit later. She was going to see if Interventional Radiology wanted to do the TPA procedure. The best guess was that Lucy would have it done tomorrow morning. They had time today and got to her about 1:30 this afternoon.
The procedure went very quickly. She was done by 2:45. There was a very large clot in her thigh. The clot in her calf was small enough that they were going to let nature take its course. Her left leg was much less clogged than her right leg was a couple weeks ago. We hope that means she will not need subsequent procedures and her recovery time will be shorter. It will be a couple days before she will be able to do the Hokey Pokey.
Of course having the procedure means she also got moved from 8th floor to 3rd floor. The first move was into a two bed room. She got moved again about 20 minutes later to a private room.
Her evening is winding down now that there isn't as much activity. She knows sleeping will be tough tonight because they have to wake her every two hours to do a neurology check. Lucy got to talk to Diane and Julie on the phone tonight which helped brighten her day. I found the beaded owl pictured below in the gift shop. It is beaded and stands about 6" tall.
Here's hoping Leap Day goes well for her. We wish all of you a good evening and have a Happy Leap Day tomorrow!
Lucy's day had an unexpected turn of events, but in her favor. Marynne from Minnesota Oncology visited with her this morning. Dr. Thurmes was unavailable this morning. Lucy's leg was improving very slowly. Dr. Nashawaty felt that since Lucy had not had a nosebleed in several days, perhaps the TPA catheter option was available.
Her next visitor was Dr. Dittes, an Infections Disease specialist. He felt that Lucy may have celluitis but acknowledged to her that her blood cultures and blood tests show no obvious indication of a bacterial infection. He also told her that her blood clots could be the majority of the fever spikes and redness. He changed the antibiotic she was on to two different IV antibiotics. There is nothing to be concerned about.
Marynne came back a bit later. She was going to see if Interventional Radiology wanted to do the TPA procedure. The best guess was that Lucy would have it done tomorrow morning. They had time today and got to her about 1:30 this afternoon.
The procedure went very quickly. She was done by 2:45. There was a very large clot in her thigh. The clot in her calf was small enough that they were going to let nature take its course. Her left leg was much less clogged than her right leg was a couple weeks ago. We hope that means she will not need subsequent procedures and her recovery time will be shorter. It will be a couple days before she will be able to do the Hokey Pokey.
Of course having the procedure means she also got moved from 8th floor to 3rd floor. The first move was into a two bed room. She got moved again about 20 minutes later to a private room.
Her evening is winding down now that there isn't as much activity. She knows sleeping will be tough tonight because they have to wake her every two hours to do a neurology check. Lucy got to talk to Diane and Julie on the phone tonight which helped brighten her day. I found the beaded owl pictured below in the gift shop. It is beaded and stands about 6" tall.
Here's hoping Leap Day goes well for her. We wish all of you a good evening and have a Happy Leap Day tomorrow!
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| Lucy's new friend |
Monday, February 27, 2012
Holding pattern
So much for Lucy's heparin staying in the therapeutic range. She has had two adjustments and boluses today and will have a re-test at 9:30 pm tonight. It sounds like she is close to where they want her. The tricky part is having her stay in the therapeutic range for a couple days.
Her nosebleeds have stopped, but Dr. Thurmes is very reluctant to run a TPA catheter in her leg. The TPA would speed up getting rid of the thigh clot. Right now she has to stay the course. Perhaps that could change the longer she goes without a nosebleed. Right now she is dabbing saline gel in her nostrils every four hours and that seems to be working.
The two unit transfusion helped a little, but Lucy's hemoglobin was only at 7.9 today. More than likely she will need a transfusion tomorrow or Wednesday. We have not heard how her white count or platelet count were faring.
She has still been having fever spikes today. Her worst one was 102.8° which was taken down with Tylenol and cool washcloths on the forehead. There is still no indication of an infection. The fevers break within 30 minutes.
One nice thing was she got to use a shower today. The disposable washcloths are nice, but having some independence is nicer. She also got a birthday rose from one of the floral shops today. That was a nice present.
It's still wait and see. A lot depends on how fast her body starts wearing down that clot in the thigh. We have no idea how soon she will be going home. It's frustrating, but it is what it is.
Thank you so much for caring! Your comments are like her getting a Get Well card without having to wait for mail delivery.
Her nosebleeds have stopped, but Dr. Thurmes is very reluctant to run a TPA catheter in her leg. The TPA would speed up getting rid of the thigh clot. Right now she has to stay the course. Perhaps that could change the longer she goes without a nosebleed. Right now she is dabbing saline gel in her nostrils every four hours and that seems to be working.
The two unit transfusion helped a little, but Lucy's hemoglobin was only at 7.9 today. More than likely she will need a transfusion tomorrow or Wednesday. We have not heard how her white count or platelet count were faring.
She has still been having fever spikes today. Her worst one was 102.8° which was taken down with Tylenol and cool washcloths on the forehead. There is still no indication of an infection. The fevers break within 30 minutes.
One nice thing was she got to use a shower today. The disposable washcloths are nice, but having some independence is nicer. She also got a birthday rose from one of the floral shops today. That was a nice present.
It's still wait and see. A lot depends on how fast her body starts wearing down that clot in the thigh. We have no idea how soon she will be going home. It's frustrating, but it is what it is.
Thank you so much for caring! Your comments are like her getting a Get Well card without having to wait for mail delivery.
Sunday, February 26, 2012
Land of transfusion
Lucy's hemoglobin was at 6.0 and her platelets were at 50,000. Dr. Nashawaty had rounds this weekend and he mentioned the irony of keeping Lucy on heparin but also having to transfuse platelets. Her Alimta treatment probably caused the platelet count drop and may be contributing to the hemoglobin level being low.
On the plus side, her heparin is in therapeutic range. She will be in the hospital until at least tomorrow. One of the criteria for release is getting her off IV heparin. Our guess is they would also like to see any risk of infection in her leg eliminated and a noticeable improvement in her leg. It appears her leg is getting a little better. Like her last hospital stay, this will be a day-by-day event.
Today saw a steady stream of nurses and nurses assistants in and out. Lucy said one of her arm blood draws was at 3:00 am this morning. Her port has heparin in it so certain blood tests must be done via her arm.
Lucy's appetite is still good. I went the to cafeteria and picked up a grilled chicken sandwich for lunch. She asked to sample it and wound up eating the whole thing.
Steve and Liz came by this morning and brought cookies. Suzy was by this afternoon and left a stuffed snowy owl and a couple magazines. Julie called to see how Lucy is doing. We also appreciated all the great notes from everyone. Lucy and I do read the comments left in the group or in the blog, and we thank everyone for their words of encouragement.
We're hoping her heparin stays in therapeutic range tomorrow. That will put her one step closer to going home.
On the plus side, her heparin is in therapeutic range. She will be in the hospital until at least tomorrow. One of the criteria for release is getting her off IV heparin. Our guess is they would also like to see any risk of infection in her leg eliminated and a noticeable improvement in her leg. It appears her leg is getting a little better. Like her last hospital stay, this will be a day-by-day event.
Today saw a steady stream of nurses and nurses assistants in and out. Lucy said one of her arm blood draws was at 3:00 am this morning. Her port has heparin in it so certain blood tests must be done via her arm.
Lucy's appetite is still good. I went the to cafeteria and picked up a grilled chicken sandwich for lunch. She asked to sample it and wound up eating the whole thing.
Steve and Liz came by this morning and brought cookies. Suzy was by this afternoon and left a stuffed snowy owl and a couple magazines. Julie called to see how Lucy is doing. We also appreciated all the great notes from everyone. Lucy and I do read the comments left in the group or in the blog, and we thank everyone for their words of encouragement.
We're hoping her heparin stays in therapeutic range tomorrow. That will put her one step closer to going home.
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| I found this scrub top in the gift shop. Lucy wants to see it when she is more mobile. I'm sure she will get one. |
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| Suzy brought along a new friend for Lucy |
Saturday, February 25, 2012
There will be blood
This morning started with a 75 minute nosebleed. Lucy was supposed to start using Afrin nasal spray but her bleeding started moments after the first spray. She got switched over to a saline gel.
Diane visited Lucy this afternoon. It really helped Lucy's mood. Diane can get Lucy laughing which is really needed right now. Thank you, Diane! She also suggested the title for tonight's post (it was originally Let it bleed). Between the nosebleed and the blood draws, Lucy could have supplied the blood for this season of "Dexter".
Lucy is still running a temperature of around 101°. They are running an IV antibiotic and she is getting Tylenol for her temp.They also drew blood to see if her blood thinner dose needs adjusting. Blood thinners are very touchy. Then they drew blood again looking at her Heparin Factor A. And then drew a third time for blood cultures (again). She also received two large heparin bolus doses.
It sounds like Suzy is going to visit Lucy tomorrow. Unfortunately when Suzy called tonight, Lucy had a lab tech wrapping a tourniquet getting ready for a blood draw and two nurses going over the heparin bolus double check and co-signing procedure. Things do get a little hectic.
Keep Lucy in your thoughts and prayers tonight. Thank you for all your support!
Diane visited Lucy this afternoon. It really helped Lucy's mood. Diane can get Lucy laughing which is really needed right now. Thank you, Diane! She also suggested the title for tonight's post (it was originally Let it bleed). Between the nosebleed and the blood draws, Lucy could have supplied the blood for this season of "Dexter".
Lucy is still running a temperature of around 101°. They are running an IV antibiotic and she is getting Tylenol for her temp.They also drew blood to see if her blood thinner dose needs adjusting. Blood thinners are very touchy. Then they drew blood again looking at her Heparin Factor A. And then drew a third time for blood cultures (again). She also received two large heparin bolus doses.
It sounds like Suzy is going to visit Lucy tomorrow. Unfortunately when Suzy called tonight, Lucy had a lab tech wrapping a tourniquet getting ready for a blood draw and two nurses going over the heparin bolus double check and co-signing procedure. Things do get a little hectic.
Keep Lucy in your thoughts and prayers tonight. Thank you for all your support!
Friday, February 24, 2012
Mondays are supposed to suck, not Fridays
Lucy's leg started getting worse this morning. She called Minnesota Oncology and they set up an appointment for 2:00 this afternoon.
Her nosebleed started at 1:30 and finally let up around 3:00. The nurse practitioner at Minnesota Oncology helped Lucy with her nosebleed. Anticoagulants are so fun. She also was contacted by Dr. Thurmes who was at Fairview Southdale on rounds.
She was admitted to Fairview Southdale as a precaution. Lucy also had some extra blood work drawn along with blood cultures. They need to wait 18 hours after her Lovenox injection before they can start IV heparin. That means she will get woken at 4:30 am. She just had completed an IV antibiotic because they suspect cellulitis. An ultrasound of the left leg found that the clot in her groin was solidifying. We are hoping she will not need a TPA catheter started tomorrow. In the past few hours, she started running a fever which is at about 102° right now. The Tylenol will help reduce the fever.
It is frustrating that this clotting problem flared up again. More than likely she is here until Sunday. We were looking forward to a nice quiet weekend at home and having her leg continue to heal. Now it's back to a wait and see mode. Keep Lucy in your thoughts and prayers this weekend. It helps us get through these setbacks.
At least I don't have to play Nurse Ratched with the Lovenox while she's in the hospital. See, I did manage to find something positive.
Her nosebleed started at 1:30 and finally let up around 3:00. The nurse practitioner at Minnesota Oncology helped Lucy with her nosebleed. Anticoagulants are so fun. She also was contacted by Dr. Thurmes who was at Fairview Southdale on rounds.
She was admitted to Fairview Southdale as a precaution. Lucy also had some extra blood work drawn along with blood cultures. They need to wait 18 hours after her Lovenox injection before they can start IV heparin. That means she will get woken at 4:30 am. She just had completed an IV antibiotic because they suspect cellulitis. An ultrasound of the left leg found that the clot in her groin was solidifying. We are hoping she will not need a TPA catheter started tomorrow. In the past few hours, she started running a fever which is at about 102° right now. The Tylenol will help reduce the fever.
It is frustrating that this clotting problem flared up again. More than likely she is here until Sunday. We were looking forward to a nice quiet weekend at home and having her leg continue to heal. Now it's back to a wait and see mode. Keep Lucy in your thoughts and prayers this weekend. It helps us get through these setbacks.
At least I don't have to play Nurse Ratched with the Lovenox while she's in the hospital. See, I did manage to find something positive.
Wednesday, February 22, 2012
Blood, sweat and tears
We know that nosebleeds are a side effect of blood thinners. Lucy had one that lasted for almost 45 minutes. She had another this morning that was done in about 10 minutes.
We arrived at Fairview Southdale IV Therapy at 7:30 am for her transfusion. The type and match took a little longer than usual, so her transfusion started at 9:00 and was done at 12:45.
She is still really tired. Last night she had problems sleeping and woke up several times. Now she's home, warm, fed and relaxing. Her leg isn't quite as sore as yesterday and the swelling has abated somewhat.
Lucy's next blood test is Monday afternoon. There may not be another update until then. In the meantime, give your loved ones a hugs from us and thank you for your support!
We arrived at Fairview Southdale IV Therapy at 7:30 am for her transfusion. The type and match took a little longer than usual, so her transfusion started at 9:00 and was done at 12:45.
She is still really tired. Last night she had problems sleeping and woke up several times. Now she's home, warm, fed and relaxing. Her leg isn't quite as sore as yesterday and the swelling has abated somewhat.
Lucy's next blood test is Monday afternoon. There may not be another update until then. In the meantime, give your loved ones a hugs from us and thank you for your support!
Tuesday, February 21, 2012
Down to once per day
We started today with about two inches of snow. That is normally boring news but this has not been a typical winter. This stuff was like the mashed potatoes served in the school cafeteria. The snow blower had problems with it because the discharge chute kept plugging. I think the snow lovers might be disappointed with the stuff, too.
Lucy's leg puffed back up a bit by almost 2 cm though her pain is about the same. She is really run down today. We had been suspecting her hemoglobin was dropping and it has. She is at 6.8. Her two unit transfusion is scheduled tomorrow at 7:30 am. It will probably take four hours to complete.
She also has to change her injection schedule before the next labs. We were targeting her injection for around 6:00 pm. This would avoid conflicts with work schedules, dinner and TV. Now she is to get her injection at 11:00 tomorrow and work towards 10:00 by Monday's lab appointment. The lab is also getting moved to 4:30. Of course she's going the be at Fairview Southdale IV Therapy at 11:00 tomorrow.
One thing we are happy about is she is down to daily injections rather than twice daily. We also enjoyed Julie's stew tonight. OK, enjoyed is an understatement, devoured is more like it.
Here's hoping we have a dull and boring day tomorrow.
Lucy's leg puffed back up a bit by almost 2 cm though her pain is about the same. She is really run down today. We had been suspecting her hemoglobin was dropping and it has. She is at 6.8. Her two unit transfusion is scheduled tomorrow at 7:30 am. It will probably take four hours to complete.
She also has to change her injection schedule before the next labs. We were targeting her injection for around 6:00 pm. This would avoid conflicts with work schedules, dinner and TV. Now she is to get her injection at 11:00 tomorrow and work towards 10:00 by Monday's lab appointment. The lab is also getting moved to 4:30. Of course she's going the be at Fairview Southdale IV Therapy at 11:00 tomorrow.
One thing we are happy about is she is down to daily injections rather than twice daily. We also enjoyed Julie's stew tonight. OK, enjoyed is an understatement, devoured is more like it.
Here's hoping we have a dull and boring day tomorrow.
Sunday, February 19, 2012
Tomorrow will be a better day
Lucy couldn't visit her dad today. Her thigh was too painful. This happened the last time she had a clot in her left leg. The good news is her calf diameter was almost a full centimeter smaller and the erythema is almost gone. Her right calf diameter also was 0.8 cm smaller.
It is astonishing at how painful a blood clot can be. Her clots are maybe the diameter of a single piece of couscous. At times she rates the pain as worse than her post-surgical pain. I'm hoping her leg pain is better tomorrow.
I visited her dad today. On my way there I saw three bald eagles soaring over Highway 100 at Minnehaha Creek. He's in pretty good spirits and enjoyed having company. Suzy and Steve also came by. Lucy's family has treated me so well through the years and I enjoy being with them. I'm very lucky because I know too many people who have issues with their in-laws.
Her first injection went well today and her second one was OK. I must be getting the hang of it or she's learning to lie really well (just kidding!). I picked up one of her favorites from Qdoba on my way home tonight. That helped brighten up her day.
Lucy's next blood testing will be on Tuesday. She was originally scheduled for one on Monday and another on Tuesday, but the two blood tests are combined now. We can't wait for Tuesday because that is when her Lovenox cuts back to one injection per day. It appears she will be receiving injections for at least 30 more days. I do hope that she eventually goes back on Coumadin.
It is astonishing at how painful a blood clot can be. Her clots are maybe the diameter of a single piece of couscous. At times she rates the pain as worse than her post-surgical pain. I'm hoping her leg pain is better tomorrow.
I visited her dad today. On my way there I saw three bald eagles soaring over Highway 100 at Minnehaha Creek. He's in pretty good spirits and enjoyed having company. Suzy and Steve also came by. Lucy's family has treated me so well through the years and I enjoy being with them. I'm very lucky because I know too many people who have issues with their in-laws.
Her first injection went well today and her second one was OK. I must be getting the hang of it or she's learning to lie really well (just kidding!). I picked up one of her favorites from Qdoba on my way home tonight. That helped brighten up her day.
Lucy's next blood testing will be on Tuesday. She was originally scheduled for one on Monday and another on Tuesday, but the two blood tests are combined now. We can't wait for Tuesday because that is when her Lovenox cuts back to one injection per day. It appears she will be receiving injections for at least 30 more days. I do hope that she eventually goes back on Coumadin.
Saturday, February 18, 2012
Laissez les bons temps rouler!
Well, maybe not today. Lucy woke up with stomach problems this morning and was running a mild fever spike because of her blood clots. Her mood wasn't very cheery and she was fairly wiped out. Alimta is fairly well tolerated, but it still can cause a bit of stomach distress and wipe out. That's why she has to take the oral dexamethasone (steroid) twice a day for the day before, day of and day after chemo. The past few months have seen her face a number of challenges and it takes its toll. My guess is today's stomach problems were a direct result of her breakfast choices. She hadn't had Lucky Charms in several months. The whole grains sometimes cause a bit more fermentation in the gut when one is not used to eating them. She started feeling better later this afternoon.
Her first shot Lovenox shot went better than yesterday's. We're probably figuring out the right timing and rhythm. The humorous thing about the Lovenox self-injection guide is the phrase "think love handles". Lucy doesn't have any. Heck, I've dropped 54 pounds in the past year and barely have any remaining.
We hope Lucy will be feeling up to visiting her dad tomorrow. Her left leg circumference was almost a full centimeter smaller than yesterday's measurement. Her discomfort is now mostly from both ankles and seems to be joint pain rather than tissue pain. The pain killers are still effective and she is using fewer of them.
I must be suffering from chemo brain by proxy. I forgot to mention Lucy had a coworker stop by Thursday morning with some homemade soups. Her coworkers have been so wonderful and supportive! They have made meals and sent cards and flowers. It's nice to know there are some good companies left.
And on the subject of chemo brain, I managed to mangle the "Comfortably Numb" lyric yesterday. Sorry about that! How I managed to turn "just a little pin prick" into "you'll feel a little pin prick" is beyond me. I'd like to say "Damn you autocorrect" but I wasn't posting from an iPhone. I have an Andriod phone and there doesn't seem to be an equivalent, perhaps thankfully.
For those of you that are able, we hope you enjoyed a walk today. Lucy should be able to be walking normally soon.
Her first shot Lovenox shot went better than yesterday's. We're probably figuring out the right timing and rhythm. The humorous thing about the Lovenox self-injection guide is the phrase "think love handles". Lucy doesn't have any. Heck, I've dropped 54 pounds in the past year and barely have any remaining.
We hope Lucy will be feeling up to visiting her dad tomorrow. Her left leg circumference was almost a full centimeter smaller than yesterday's measurement. Her discomfort is now mostly from both ankles and seems to be joint pain rather than tissue pain. The pain killers are still effective and she is using fewer of them.
I must be suffering from chemo brain by proxy. I forgot to mention Lucy had a coworker stop by Thursday morning with some homemade soups. Her coworkers have been so wonderful and supportive! They have made meals and sent cards and flowers. It's nice to know there are some good companies left.
And on the subject of chemo brain, I managed to mangle the "Comfortably Numb" lyric yesterday. Sorry about that! How I managed to turn "just a little pin prick" into "you'll feel a little pin prick" is beyond me. I'd like to say "Damn you autocorrect" but I wasn't posting from an iPhone. I have an Andriod phone and there doesn't seem to be an equivalent, perhaps thankfully.
For those of you that are able, we hope you enjoyed a walk today. Lucy should be able to be walking normally soon.
Friday, February 17, 2012
"OK...just a little pin prick..."
Lovenox was not what was referenced by the lyric snippet from Pink Floyd's "Comfortably Numb". Lucy survived my first injection attempt and I still have my nine fingers. We found some advice on the Lovenox web site along with a handy PDF to assist with the injections. We'll be glad when Tuesday gets here. She gets reduced to once per day starting Wednesday.
Lucy has her appointments scheduled for the next three weeks. I think the phone got a workout today.
Lucy's left leg looks better than yesterday. The erythema is smaller and a bit less red. Her right leg is back to normal except for some flaking skin. We took measurements of both calves so we have a reference point as was suggested by Dr. Thurmes. I'll be taking twice daily measurements until her leg gets better.
Lucy's dad had minor surgery this afternoon. His surgery got bumped for an emergency, so it started at 3:00 instead of 11:00. Lucy had a Neulasta shot appointment at 4:30 so we couldn't make it to the hospital tonight. She remembered how out of it she was when coming out of general anesthesia, and how it was nice that people cared, but she would rather have had some time to get reoriented and rest up. We're going to visit him tomorrow. It sounds like he might be getting released tomorrow late afternoon.
It was a very nice day outside today. We hope you had a chance to enjoy it.
Lucy has her appointments scheduled for the next three weeks. I think the phone got a workout today.
Lucy's left leg looks better than yesterday. The erythema is smaller and a bit less red. Her right leg is back to normal except for some flaking skin. We took measurements of both calves so we have a reference point as was suggested by Dr. Thurmes. I'll be taking twice daily measurements until her leg gets better.
Lucy's dad had minor surgery this afternoon. His surgery got bumped for an emergency, so it started at 3:00 instead of 11:00. Lucy had a Neulasta shot appointment at 4:30 so we couldn't make it to the hospital tonight. She remembered how out of it she was when coming out of general anesthesia, and how it was nice that people cared, but she would rather have had some time to get reoriented and rest up. We're going to visit him tomorrow. It sounds like he might be getting released tomorrow late afternoon.
It was a very nice day outside today. We hope you had a chance to enjoy it.
Thursday, February 16, 2012
Stop me if you've heard this before...
We fretted about today's oncologist visit, but Lucy's left leg stole the spotlight. We did not even get a chance to discuss the PET scan or CA125 level. Her rash is an erythema and is a sign of a blood clot. Her leg also ballooned up this morning.
Lucy did get her Alimta treatment, so something went right. She can take her multivitamins instead of the prescription folic acid since the multivitamins contain the requisite 400 micrograms folic acid. Lucy's next vitamin B12 injection will be during her next treatment in three weeks.
She was supposed to visit Dr. Thurmes tomorrow, but he saw her while she was getting chemotherapy. Lucy had an ultrasound on her left leg at Suburban Imaging at 6:30. As a precaution, Lucy will be getting twice daily Lovenox injections for a week followed by daily injections for around six months. Her Coumadin was stopped immediately.
We had about 45 minutes between the end of chemo and the ultrasound, so we had a quick dinner at Leeann Chin's about eight blocks from Southdale Medical Building. The Heartland Cafe in the medical building closed several months ago and a Subway is supposedly going in to replace it.
The ultrasound confirmed multiple clots in her left leg. However she was not admitted to the hospital. We'll find out more tomorrow. Apparently the belief is the Lovenox will work on the clots such that she won't require hospitalization or TPA catheters.
I will be administering the injections. It looks like the syringe has a short small bore needle. Lucy has no abdominal fat remaining because it was removed in her debulking surgery. The "tummy poke" is best for her, so I'll have to be careful. It's funny, I could probably give injections to anyone else, myself included, but the thought of giving Lucy a shot worries me. I know it's irrational.
So yes, you've heard the blood clots stuff before. Believe me, we hate reruns, too!
Lucy did get her Alimta treatment, so something went right. She can take her multivitamins instead of the prescription folic acid since the multivitamins contain the requisite 400 micrograms folic acid. Lucy's next vitamin B12 injection will be during her next treatment in three weeks.
She was supposed to visit Dr. Thurmes tomorrow, but he saw her while she was getting chemotherapy. Lucy had an ultrasound on her left leg at Suburban Imaging at 6:30. As a precaution, Lucy will be getting twice daily Lovenox injections for a week followed by daily injections for around six months. Her Coumadin was stopped immediately.
We had about 45 minutes between the end of chemo and the ultrasound, so we had a quick dinner at Leeann Chin's about eight blocks from Southdale Medical Building. The Heartland Cafe in the medical building closed several months ago and a Subway is supposedly going in to replace it.
The ultrasound confirmed multiple clots in her left leg. However she was not admitted to the hospital. We'll find out more tomorrow. Apparently the belief is the Lovenox will work on the clots such that she won't require hospitalization or TPA catheters.
I will be administering the injections. It looks like the syringe has a short small bore needle. Lucy has no abdominal fat remaining because it was removed in her debulking surgery. The "tummy poke" is best for her, so I'll have to be careful. It's funny, I could probably give injections to anyone else, myself included, but the thought of giving Lucy a shot worries me. I know it's irrational.
So yes, you've heard the blood clots stuff before. Believe me, we hate reruns, too!
Monday, February 6, 2012
Goin' Mobile
Discharge day! We're thrilled! Today went like this:
10:45 am: It sounds like the heperin level in her blood is making the doctors happier. The heperin IV could come out today. Because her Chromogenic Factor X test takes several hours, we will not know if she gets discharged. If she does stay, she will get moved to a different room on 8th floor. Fairview is stripping and cleaning the floors and performing maintenance checks on the rooms. "Hurry up and wait" is the theme for today.
2:00 pm: The expectation of a hospital stay is for the patient to focus on recovery. Fairview Southdale has been exceptional in that regard. Certain administrative obligations pop up which detract from recovery, like dealing with the short term disability people. "Benefits coordination" is an oxymoron in that company. Lucy was passed to three people so far and got asked the same questions. They were just as clueless after her surgery nearly two years ago.
3:00 pm: Lucy's Chromogenic Factor X result was at the midpoint of her therapuetic range. Her Coumadin dose was set and she has her instructions. The IV lines were removed and she got dressed. Everything is loaded and she has her walker. All that remains is waiting for the pharmacy to fill her prescriptions.
5:30 pm: The pharmacy finally asked for her prescription insurance card. She has a new drug plan this year and the old information was still on file. Plus there always seems to be a delay when painkillers are involved. Lucy is moving with more confidence after the IV tree went away. Her friend Diane called while I was loading the vehicle. Lucy also called her siblings during the wait. The sunset was nice.
6:10 pm: Lucy headed home wondering what sort of mess awaits after me having full run of the house for the past eleven days. She didn't cringe after touring the house, so I think I did all right. I think the chicken strip dinner I picked up for her at Dairy Queen also helped.
Our house is a rambler with a basement. The basement has a rec room, laundry room, office, ¾ bathroom, and a storage area. The bedrooms are on the main level. One of the guest rooms is now an office for her. She doesn't need to go downstairs until her leg is better. Most of the main level has laminate flooring. She is navigating the walker quite well in the house.
I picked up some of the wet wipe style washcloths hospitals use for cleaning up a patient in bed. I also picked up a couple of the shower caps that have the shampoo in them. Lucy does not have to worry about slipping in the shower.
Lucy's next blood test is Thursday. Next week she will get a PET scan since it has been about a year since her last one, see Dr. Thurmes about her leg, and see Dr. Boente about her next Alimta treatment. There is a possibility she may need a break from chemo until her leg fully recovers. Even though her leave was extended until February 13th, she may need another week added. Her next assessment may not happen until after that date.
We're happy to be home and are grateful and humbled by the outpouring of love and support you have given us through this ordeal. Thank you!
10:45 am: It sounds like the heperin level in her blood is making the doctors happier. The heperin IV could come out today. Because her Chromogenic Factor X test takes several hours, we will not know if she gets discharged. If she does stay, she will get moved to a different room on 8th floor. Fairview is stripping and cleaning the floors and performing maintenance checks on the rooms. "Hurry up and wait" is the theme for today.
2:00 pm: The expectation of a hospital stay is for the patient to focus on recovery. Fairview Southdale has been exceptional in that regard. Certain administrative obligations pop up which detract from recovery, like dealing with the short term disability people. "Benefits coordination" is an oxymoron in that company. Lucy was passed to three people so far and got asked the same questions. They were just as clueless after her surgery nearly two years ago.
3:00 pm: Lucy's Chromogenic Factor X result was at the midpoint of her therapuetic range. Her Coumadin dose was set and she has her instructions. The IV lines were removed and she got dressed. Everything is loaded and she has her walker. All that remains is waiting for the pharmacy to fill her prescriptions.
5:30 pm: The pharmacy finally asked for her prescription insurance card. She has a new drug plan this year and the old information was still on file. Plus there always seems to be a delay when painkillers are involved. Lucy is moving with more confidence after the IV tree went away. Her friend Diane called while I was loading the vehicle. Lucy also called her siblings during the wait. The sunset was nice.
6:10 pm: Lucy headed home wondering what sort of mess awaits after me having full run of the house for the past eleven days. She didn't cringe after touring the house, so I think I did all right. I think the chicken strip dinner I picked up for her at Dairy Queen also helped.
Our house is a rambler with a basement. The basement has a rec room, laundry room, office, ¾ bathroom, and a storage area. The bedrooms are on the main level. One of the guest rooms is now an office for her. She doesn't need to go downstairs until her leg is better. Most of the main level has laminate flooring. She is navigating the walker quite well in the house.
I picked up some of the wet wipe style washcloths hospitals use for cleaning up a patient in bed. I also picked up a couple of the shower caps that have the shampoo in them. Lucy does not have to worry about slipping in the shower.
Lucy's next blood test is Thursday. Next week she will get a PET scan since it has been about a year since her last one, see Dr. Thurmes about her leg, and see Dr. Boente about her next Alimta treatment. There is a possibility she may need a break from chemo until her leg fully recovers. Even though her leave was extended until February 13th, she may need another week added. Her next assessment may not happen until after that date.
We're happy to be home and are grateful and humbled by the outpouring of love and support you have given us through this ordeal. Thank you!
Sunday, February 5, 2012
Sunday, Sunday
Lucy had a chorus of nurses and nurse's assistants come in and sing "Happy Birthday" to her this morning. That was really nice! Steve and Liz brought a strawberry tart cake. Julie and Suzy came by for a few hours, so Lucy had all her siblings here. Everyone got to see Lucy go for a walk with the Occupational Therapy person. Lucy also had someone from Physical Therapy come by. They worked on some exercises and Lucy has some new ones to add to the mix. Lucy's dad called to wish her happy birthday and see how she was doing. Lucy didn't wear a hat or scarf today so everyone got to see how much hair she has. I think that is the first time she went "topless" since she lost her hair in the first cycle of chemo.
Suzy and Julie did get to see Lucy's leg and it may have been a bit unpleasant. Lucy assured them it was a lot worse and much more painful eleven days ago. Her leg looks like it had a sunburn with a little peeling in a couple areas. There are areas on her lower leg where the color is getting towards normal. Her leg is slightly warm to the touch rather than hot. She has full sensation in her leg and it is not painful to touch it.
Dr. Singh came by to check on Lucy's progress. Lucy's Chromogenic Factor X reading today was in therapeutic range. She will have the heperin drop through the night and will have blood drawn for another test tomorrow. The results will be back in the early afternoon. If the Chromogenic Factor X test is in the therapeutic range again, Lucy could be discharged. The transfusion last night took her hemoglobin up to 10.7. It's been awhile since it was close to normal.
We will have some questions for the discharge meeting. There will need to be some appointments set up to test her blood. The hospital will lend her a walker for a week or two. We will also need a list of symptoms that necessitate a call to the doctor or a trip to the hospital. It is very possible Lucy will need to extend her disability leave another week.
There is a minor issue with pain management that still needs resolution. Lucy knows that she will not be totally pain free tomorrow. It will take a week or two for her leg to get back to normal. Her pain increases when she puts weight on her ankle. After she sits down, the pain starts subsiding. It sounds like the pain increase is not much. She describes it as annoying when she walks. It does not keep her awake at night and it does not distract her when she is sitting with her leg propped up. Lucy has been fortunate to never require hospitalization until her surgery in April 2010. She has never broken a bone or needed stitches. All the stuff she is going through is uncharted waters to her. It's hard for her to describe what type of pain, or how much pain she feels. Now that she has told them when she feels an increase in pain and when it starts to diminish, some of the concerns have abated.
We're cautiously optimistic about her going home tomorrow. It really depends on the blood test. Please keep your fingers crossed for her!
Thank you for all the birthday wishes today! Lucy is lucky to have such an amazing group of supporters!
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