Lucy was nervous about coming home. In the hospital you can press a button and have someone there to help. At home, she has me close by. The people in the hospital obviously have had many hundred hours more training in patient care than I. However, her hospice care case manager met with us on Friday before she was discharged and covered everything very thoroughly. One of the hospice nurses met us at the house with her medications and gave me some charting forms and walked me though each of the drugs.
Diane and my parents were with us at the hospital on Friday. Once we had a firm time set up for the equipment delivery, my parents went to our house to let the delivery people in. Lucy's siblings came over to visit after she got home.
Today was a very busy day for Lucy. A hospice nurse, Ann, came by to check on Lucy. Ann's father is in hospice battling gastroblastoma so she is aware of the hiccup problem Lucy is having. She also had some suggestions for Lucy and had a couple more prescriptions sent via courier to our house.
Lucy is getting a bathing and massage service twice per week. After Lindsay came by today, Lucy wants to increase it to three times per week. It was so nice for her to get pampered for 45 minutes and she was beaming afterwards.
Lucy's siblings and her dad visited her this afternoon. We had a very nice dinner together. Lucy had some spaghetti and some chocolate cake. We celebrated Steve's birthday a couple days early. Diane stopped by earlier in the afternoon for a bit. It was nice to help Diane celebrate her birthday today.
Lucy has not needed oxygen today. She wanted it on a very low setting tonight. She is still having issues with hiccups, so her Thorazine dose was adjusted upwards slightly. That seems to be working. She has not had much abdominal pain today except for the hiccups.
Lucy is still really tired. Her throat is a little sore from being on oxygen in the hospital. She has been using Halls Breezers to help with that. She also has some Popsicles and Jello to help soothe her throat.
Thank you so much for caring for us! I hope these blog posts have help show everyone what an amazing woman I married. She is the true embodiment of life worth living. Her strength, courage and dignity are an inspiration. My hope is when it is my time to transcend this existence that I will follow Lucy's example.
Saturday, March 31, 2012
Friday, March 30, 2012
Lucy heading home today
Her home hospice care is getting set up today. She will be going home at 3:00 this afternoon. Lucy is tolerating her oral medications well. She slept about six hours last night. Her hospice nurse will meet us at home at 3:30.
Thank you for your caring during this difficult time.
Thank you for your caring during this difficult time.
Thursday, March 29, 2012
Palliative care, the battle is ending
Right now she has some guests here at the hospital. Her brother and sister-in-law (Steve and Liz), her sisters (Julie and Suzy), my parents, Lucy's friend Diane and a
friend of Lucy's family, Barb, are here. I'll be here for the duration.
The morphine is making her a bit groggy, but she is able to talk to people. She is alert and fully cognizant. Lucy knows that there is nothing more that can be done for her.
Lucy is suffering from septic shock. There are indications her bowel perforated. She is too weak for surgery and her chest X-ray showed significant damage to her organs. At this point, she will be receiving pain medication and the hospital staff will make her as comfortable as possible while she transitions from this existence. The infection is too far advanced to be contained by antibiotics. She is weak enough that we may be unable to move her into a hospice or get her back home for her final days. Her vital signs did improve after receiving two units of blood, but she will be anemic again quickly.
None of know how much longer Lucy will be with us. However, the end will probably come rather quickly, probably within a couple days. While we will not get the long slow goodbye, she is getting a chance to be with her family. I know I wanted her journey to end with a happily ever after, but I am thankful for every day I had with her.
Please pray for Lucy. She has been incredibly brave through this ordeal. Thank you so much for all the love and support you have given us. I know that has been a recurring theme in my posts, but it helped us more than you can imagine.
The morphine is making her a bit groggy, but she is able to talk to people. She is alert and fully cognizant. Lucy knows that there is nothing more that can be done for her.
Lucy is suffering from septic shock. There are indications her bowel perforated. She is too weak for surgery and her chest X-ray showed significant damage to her organs. At this point, she will be receiving pain medication and the hospital staff will make her as comfortable as possible while she transitions from this existence. The infection is too far advanced to be contained by antibiotics. She is weak enough that we may be unable to move her into a hospice or get her back home for her final days. Her vital signs did improve after receiving two units of blood, but she will be anemic again quickly.
None of know how much longer Lucy will be with us. However, the end will probably come rather quickly, probably within a couple days. While we will not get the long slow goodbye, she is getting a chance to be with her family. I know I wanted her journey to end with a happily ever after, but I am thankful for every day I had with her.
Please pray for Lucy. She has been incredibly brave through this ordeal. Thank you so much for all the love and support you have given us. I know that has been a recurring theme in my posts, but it helped us more than you can imagine.
Wednesday, March 28, 2012
Pray for Lucy
Lucy was taken to Fairview Southdale by ambulance at 3:30 pm CDT. She is suffering from septic shock and the prognosis is not good. The next 24 hours will be touch and go.
Please keep her in your prayers. Her battle may be ending.
Monday, March 26, 2012
Small victories
If you were to talk to anyone enduring a chronic disease, or to their caregiver, you will hear how valuable the small victories are. There are no Pyrrhic victories because winning means they are still here to fight.
Saturday was the toughest day Lucy has had since her surgery almost two years ago. She started having really painful stomach issues before going to bed Friday night. Several rounds of nausea later she started feeling less miserable. It's a tough victory, but a victory nonetheless.
Lucy's had two nights in a row that she has not had to get up. The Ativan seems to have helped her stomach a bit. One thing that has also helped is staggering her Pradaxa and Hexalen in the morning and evenings. Both drugs use quick dissolving capsules. Quick dissolving capsules tend to be acidic and can cause stomach irritation.We'll take this victory, too.
Her menu has expanded a bit. That's a victory because Ensure and Activia get boring after a couple weeks. We're being careful with introducing foods that are more solid. She is finally able to take her SlowFe which should help her anemia problem. To help with her stomach gurgling, we found that simethicone gel caps helped more than the Zantac.
Lucy still has very little energy. Her transfusion didn't seem to help much with her energy level. This might be a cumulative effect of the Hexalen. She is as wiped out now as she was a a couple days after her Taxol round.
Lucy's coworker Cathy stopped by tonight and dropped off a fun gift basket. Her coworkers have been so supportive and generous. Julie called tonight and helped cheer Lucy up some more.
It's been a long month with the setbacks and slow recovery. She hasn't been able to get out much. During our warm spell, she managed to get into the sunporch a couple times. Today was actually below normal for temperature, with some light rain this morning and several hours of strong wind this afternoon. Tomorrow is supposed to be warm, sunny and windy. That might help with her energy level.
Your love and support help Lucy immensely! Thank you so much!
Saturday was the toughest day Lucy has had since her surgery almost two years ago. She started having really painful stomach issues before going to bed Friday night. Several rounds of nausea later she started feeling less miserable. It's a tough victory, but a victory nonetheless.
Lucy's had two nights in a row that she has not had to get up. The Ativan seems to have helped her stomach a bit. One thing that has also helped is staggering her Pradaxa and Hexalen in the morning and evenings. Both drugs use quick dissolving capsules. Quick dissolving capsules tend to be acidic and can cause stomach irritation.We'll take this victory, too.
Her menu has expanded a bit. That's a victory because Ensure and Activia get boring after a couple weeks. We're being careful with introducing foods that are more solid. She is finally able to take her SlowFe which should help her anemia problem. To help with her stomach gurgling, we found that simethicone gel caps helped more than the Zantac.
Lucy still has very little energy. Her transfusion didn't seem to help much with her energy level. This might be a cumulative effect of the Hexalen. She is as wiped out now as she was a a couple days after her Taxol round.
Lucy's coworker Cathy stopped by tonight and dropped off a fun gift basket. Her coworkers have been so supportive and generous. Julie called tonight and helped cheer Lucy up some more.
It's been a long month with the setbacks and slow recovery. She hasn't been able to get out much. During our warm spell, she managed to get into the sunporch a couple times. Today was actually below normal for temperature, with some light rain this morning and several hours of strong wind this afternoon. Tomorrow is supposed to be warm, sunny and windy. That might help with her energy level.
Your love and support help Lucy immensely! Thank you so much!
Thursday, March 22, 2012
Another setback
Lucy's stomach issues are a result of one of the cancer growths pressing against her small intestine. She has had a stubborn growth in her lower left abdomen since her debulking surgery. That growth has gotten a bit larger. So while she does not have a full mechanical ileus (intestinal blockage due to an object), she does have a partial ileus. The course of action is to keep on the Hexalen and see if it starts shrinking the tumor.
This setback is still not a reason to hit the panic button. It's still too early to tell how this will resolve. We all need to stay positive for Lucy. She's got the heart of a warrior and a lot of untapped sisu yet. Her clotting problem seems to be resolved which is a huge step in the right direction.
Tomorrow she goes in for a two bag transfusion because her hemoglobin was 6.4. She has to be at Fairview Southdale at 8:00 am. She did not have to get one tonight because her hemoglobin was over 6.0. It's nicer driving her home at 1:30 pm than 2:30 am.
Lab work shows no gastrointestinal infection, which is a good sign. She is still taking Pradaxa and Hexalen. After two rounds of nausea late last night and early this morning, her oncologist had her taking Compazine every four hours to see if that helped. It didn't help much. She will be switching to Ativan which should provide better relief for the stomach issues. Ativan was originally developed to alleviate nausea and has a bonus of being an anti-anxiety drug.
We tried a couple simple home remedies that would not impact her medications. I found some ginger ale that has about 1 oz. of ginger per 12 oz. bottle called Reed's Extra Ginger Brew at Byerly's in Edina. Most ginger ales use a tiny fraction of that for flavoring. Ginger is supposed to have properties that soothe stomach problems. It seemed to make her even more queasy. I like it so at least it won't go to waste.
She tried applesauce for lunch yesterday and wound up with a very rude and quick upset. Apple pectin is another food stuff that is supposed to help with stomach upset. Ensure and Activia seem to be the only things right now that don't cause issues. She tried a couple unsalted top saltines (sounds like an oxymoron, doesn't it) and they do not seem to help though she tolerated them well. She is drinking about a pint of Gatorade or Powerade a day to keep her electrolytes up.
Yesterday and today were more typical gray and slightly drizzly March days, albeit about 20°F warmer than average. Tonight is supposed to bring more rain. We are in a moderate drought right now, so the rain is welcomed. The frost is out of the ground and the rain can actually soak in. Most of the lakes in the Twin Cities metro are reporting "ice out" which is almost a month early. At least the flowering shrubs like the weather:
This setback is still not a reason to hit the panic button. It's still too early to tell how this will resolve. We all need to stay positive for Lucy. She's got the heart of a warrior and a lot of untapped sisu yet. Her clotting problem seems to be resolved which is a huge step in the right direction.
Tomorrow she goes in for a two bag transfusion because her hemoglobin was 6.4. She has to be at Fairview Southdale at 8:00 am. She did not have to get one tonight because her hemoglobin was over 6.0. It's nicer driving her home at 1:30 pm than 2:30 am.
Lab work shows no gastrointestinal infection, which is a good sign. She is still taking Pradaxa and Hexalen. After two rounds of nausea late last night and early this morning, her oncologist had her taking Compazine every four hours to see if that helped. It didn't help much. She will be switching to Ativan which should provide better relief for the stomach issues. Ativan was originally developed to alleviate nausea and has a bonus of being an anti-anxiety drug.
We tried a couple simple home remedies that would not impact her medications. I found some ginger ale that has about 1 oz. of ginger per 12 oz. bottle called Reed's Extra Ginger Brew at Byerly's in Edina. Most ginger ales use a tiny fraction of that for flavoring. Ginger is supposed to have properties that soothe stomach problems. It seemed to make her even more queasy. I like it so at least it won't go to waste.
She tried applesauce for lunch yesterday and wound up with a very rude and quick upset. Apple pectin is another food stuff that is supposed to help with stomach upset. Ensure and Activia seem to be the only things right now that don't cause issues. She tried a couple unsalted top saltines (sounds like an oxymoron, doesn't it) and they do not seem to help though she tolerated them well. She is drinking about a pint of Gatorade or Powerade a day to keep her electrolytes up.
Yesterday and today were more typical gray and slightly drizzly March days, albeit about 20°F warmer than average. Tonight is supposed to bring more rain. We are in a moderate drought right now, so the rain is welcomed. The frost is out of the ground and the rain can actually soak in. Most of the lakes in the Twin Cities metro are reporting "ice out" which is almost a month early. At least the flowering shrubs like the weather:
 |
| The warm weather and rain kicked our forsythia bush into gear. |
Monday, March 19, 2012
"Thunder and Lightning"
Chi Coltrane could have been singing about tonight. The Twin Cities set another record high today, the eighth in the past ten days. Late this afternoon a band of thunderstorms whipped through and we received some much needed rain.
Lucy seems to have made a little progress today. She is still having stomach problems and is gamely drinking Ensure to keep from losing any more weight. Her stomach problems seem to be worse for a few hours after going to bed. She will have some tests performed tomorrow to see what might be the cause. We know it's not a mechanical ileus (bowel obstruction). She's had two so far, and they're extremely unpleasant.
She has completed day three of her Hexalen treatment. Eleven more days, then she gets a fourteen day break before the next cycle. Rinse, lather and repeat.
Tomorrow will also be a bit challenging for me. I have a 2½ presentation tomorrow afternoon. Lucy can move around the house OK, but if Minnesota Oncology wants her in for more testing or they need to send her to Fairview for some reason, she'll need me to drive.
Thank you for your time, and keep Lucy in your thoughts. For everyone in the Northern Hemisphere, enjoy the first day of spring (fall in the Southern Hemisphere) tomorrow!
Lucy seems to have made a little progress today. She is still having stomach problems and is gamely drinking Ensure to keep from losing any more weight. Her stomach problems seem to be worse for a few hours after going to bed. She will have some tests performed tomorrow to see what might be the cause. We know it's not a mechanical ileus (bowel obstruction). She's had two so far, and they're extremely unpleasant.
She has completed day three of her Hexalen treatment. Eleven more days, then she gets a fourteen day break before the next cycle. Rinse, lather and repeat.
Tomorrow will also be a bit challenging for me. I have a 2½ presentation tomorrow afternoon. Lucy can move around the house OK, but if Minnesota Oncology wants her in for more testing or they need to send her to Fairview for some reason, she'll need me to drive.
Thank you for your time, and keep Lucy in your thoughts. For everyone in the Northern Hemisphere, enjoy the first day of spring (fall in the Southern Hemisphere) tomorrow!
Sunday, March 18, 2012
"Summer in the City"
The old Lovin' Spoonful's song from the mid-1960's is very appropriate for the weather we have been experiencing the past ten days. Temperatures have been running 25°F - 35°F above our average of 42°F. Yesterday was the earliest 80°F reading the Twin Cities has had since official records started in 1871 (but only by six days) and we were flirting with 80°F again today.
Our forsythia bush has started to bloom even before the squills, snowdrops and crocuses have poked up. The maple trees are quite messy now that they are shedding their red fuzzy flowers because the leaf buds are opening. We have already had a bluebird in the birdbath, the grass is getting green and the lilacs have leaves forming. Our gentle March breeze isn't gentle because we were dealing with 20 - 30 mph wind gusts today.
Lucy is still having stomach issues. She is managing with Ensure, Activia yogurt and an occasional Immodium. The stomach noises are quieting down gradually but the noise keeps her awake at night. She still has some stomach cramping, but they seem to be lessening.
Her legs are back to normal size and she shows no sign of clot formation. She has tolerated the Pradaxa well. Once her stomach problems abate and she starts walking more, her ankle stiffness will subside. Lucy also started her Hexalen oral chemotherapy yesterday. We're a bit worried about the Hexalen since stomach problems are a common side effect. It's only the second day, so it is too early to tell how well she is tolerating it.
Diane called yesterday and helped Lucy's mood improve. She heard from Steve and Julie this morning.
For my Northern California cousins, stay warm and enjoy your snow. For our Upper Midwest readers, enjoy summer in March. And for all of you, remember Lucy and I are blessed to have you supporting her!
Our forsythia bush has started to bloom even before the squills, snowdrops and crocuses have poked up. The maple trees are quite messy now that they are shedding their red fuzzy flowers because the leaf buds are opening. We have already had a bluebird in the birdbath, the grass is getting green and the lilacs have leaves forming. Our gentle March breeze isn't gentle because we were dealing with 20 - 30 mph wind gusts today.
Lucy is still having stomach issues. She is managing with Ensure, Activia yogurt and an occasional Immodium. The stomach noises are quieting down gradually but the noise keeps her awake at night. She still has some stomach cramping, but they seem to be lessening.
Her legs are back to normal size and she shows no sign of clot formation. She has tolerated the Pradaxa well. Once her stomach problems abate and she starts walking more, her ankle stiffness will subside. Lucy also started her Hexalen oral chemotherapy yesterday. We're a bit worried about the Hexalen since stomach problems are a common side effect. It's only the second day, so it is too early to tell how well she is tolerating it.
Diane called yesterday and helped Lucy's mood improve. She heard from Steve and Julie this morning.
For my Northern California cousins, stay warm and enjoy your snow. For our Upper Midwest readers, enjoy summer in March. And for all of you, remember Lucy and I are blessed to have you supporting her!
Thursday, March 15, 2012
"How low can you go?"
That's a great question to ask someone doing the limbo dance, but not for Lucy's hemoglobin level. She had a port draw today and came in at 5.3. We knew she was getting low because her energy level was low and her color was getting pale. That necessitated an immediate transfusion at Fairview Southdale. We arrived at 6:00 pm. It sounds like she will receive two units, and if all goes well, she'll go home around 1:00 am. Her first unit started at 9:00 and each unit takes between 1½ - 2 hours.
Her stomach and intestinal problems greatly improved after the Augmentin completed. Her oncologist suggested she eat yogurt twice a day to help with the noisiness and slight queasiness. Antibiotics knock the helpful bacteria in the gut for an unfortunate loop. It will take a couple days for her system to re-balance itself.
Lucy's leg is almost normal sized again. We will have to lotion her leg a couple times per day to help soften the skin. That will help with the tightness she feels. Both ankles seem to be much less swollen and are loosening up. Her walking speed is increasing though she still needs the walker.
At this point she has not started her Hexalen yet (the oral chemotherapy). I think she wants to start it tomorrow depending on how her digestive issues are doing.
The extremely warm weather we are experiencing has been very beneficial to Lucy's gardens. The east side gardens have irises, tulips and daffodils about 3" tall. Her blue flax is back and some if it is 6" tall already! No signs of the sqills, snowdrops or crocuses yet, but they were buried under several inches of leaves. The lilacs and maple trees have leaf buds on them. She also has sedum popping up. A few of the forecasts are hinting at 80°F a couple times in the five day forecast. That will drive the frost completely out of the soil.
We hope you are enjoying decent weather where you are at. Thank you for making the time to support Lucy!
Her stomach and intestinal problems greatly improved after the Augmentin completed. Her oncologist suggested she eat yogurt twice a day to help with the noisiness and slight queasiness. Antibiotics knock the helpful bacteria in the gut for an unfortunate loop. It will take a couple days for her system to re-balance itself.
Lucy's leg is almost normal sized again. We will have to lotion her leg a couple times per day to help soften the skin. That will help with the tightness she feels. Both ankles seem to be much less swollen and are loosening up. Her walking speed is increasing though she still needs the walker.
At this point she has not started her Hexalen yet (the oral chemotherapy). I think she wants to start it tomorrow depending on how her digestive issues are doing.
The extremely warm weather we are experiencing has been very beneficial to Lucy's gardens. The east side gardens have irises, tulips and daffodils about 3" tall. Her blue flax is back and some if it is 6" tall already! No signs of the sqills, snowdrops or crocuses yet, but they were buried under several inches of leaves. The lilacs and maple trees have leaf buds on them. She also has sedum popping up. A few of the forecasts are hinting at 80°F a couple times in the five day forecast. That will drive the frost completely out of the soil.
We hope you are enjoying decent weather where you are at. Thank you for making the time to support Lucy!
Monday, March 12, 2012
Hexalen en route
Lucy's still having some stomach issues. She has had stomach problems with every oral antibiotic she has taken even before her cancer. The Augmentin is done Thursday morning. She called the doctor and was told to take some Compazine for her stomach upset. The stomach problem might take a few more days to resolve. As such, her oncologist extended her disability to April 5th. She was originally scheduled to go back to work this Friday. That was disappointing for her, too.
Lucy's legs are almost back to normal size. Her ankles are still somewhat stiff but are getting better. She still needs her walker because of her ankles, but her movement speed is getting faster.
Her Hexalen will arrive tomorrow. It sounds like she will be taking five capsules per day, but the dosage can be spread throughout the day.
Lucy's sisters have been very supportive the past couple days. I ran into a long-time (I hate the word old in this case, because he isn't even if I am!) friend yesterday and had a nice talk with him. Thanks, Dave, you don't know how much you helped! And thank you to everyone who sent emails of support!
Alimta is out, Hexalen is in
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.
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.
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!
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