Posts
Something...
People keep telling me I need to post something. I was completely offline for two weeks and even now that I'm back on the iPod I don't feel like I have much to say. Most days are the same: wake up, lie in bed, maybe muster the energy for a shower, fall back in bed exhausted, lay in bed for the rest of the day. Sounds exciting, I know.
I've ventured out of the house 4 or 5 times since I've been home. Once to take Malik (one of our dogs) to the veterinary opthamologist, only to learn that he needs surgery to have his eye removed. Sounds awful, but he's been blind in the eye for a few years and his detached lens has shifted, causing pressure buildup and lots of pain so I think he'll be more comfortable with it gone. Still, nothing like an eye removal to snap you out of your own cave of self-pity.
Other outings: doctor's office for stitch removal and prescriptions, GapKids to buy some school shirts for Hayden (disastrous outing: dizzy spells, hot flashes), lunch and pedicures with Shelley (yay!), family breakfast at LePeep (gooey buns, yum). Each and every trip has left me completely exhausted. I just have zero stamina, zero pep.
My pain control has been good since I left the hospital. I've only taken a few Tylenol here and there for headaches. I think after the nightmare of Fentanyl withdrawal in the hospital, I'm afraid to take anything stronger. So I mostly grin and bear it. I still hit the nausea meds pretty hard, but they've kept things manageable. I'm starting to wonder if the fatigue is as much hormonal as surgical. I'm sleeping better than I was initially, but still not great. So tonight I took my first hormone pill and we'll see if there's any improvement. I was hesitant to take something, but I'm almost 5 weeks out from my surgery and don't feel like I'm where I should be.
What's next? I meet with my medical oncologist next week to put together a plan for chemo. Typically, people would do 6 cycles pre-surgery and 6 cycles post-surgery. Due to scheduling issues with the surgery, I did 10 cycles beforehand. So I'll probably do less than 6, but I don't know exactly how many. It's normal to wait 6-8 weeks after surgery to give the body a chance to heal, so I've probably still got a few weeks to go. I'll keep you posted.
Sunday, August 23, 2009
Tuesday, August 11, 2009
We're going home...
Just so you know, Lisa Marie was discharged from the hospital this afternoon. The final Jackson-Pratt drain was removed early this morning meaning she was finally free from all tubing and other attachments that had restricted her these last 3 weeks. We will spend the night in the hotel here in the hospital and then we should be arriving back in Houston at ~6pm tomorrow followed shortly thereafter by hugs and kisses to 3 little ones. It will be good to be HOME.
Just so you know, Lisa Marie was discharged from the hospital this afternoon. The final Jackson-Pratt drain was removed early this morning meaning she was finally free from all tubing and other attachments that had restricted her these last 3 weeks. We will spend the night in the hotel here in the hospital and then we should be arriving back in Houston at ~6pm tomorrow followed shortly thereafter by hugs and kisses to 3 little ones. It will be good to be HOME.
Saturday, August 08, 2009
Post-Op Day 18
There have been some signs of improvement since the last post. She has begun sampling a few of the delicacies of the WHC cafeteria. She has managed to keep down about 4 bites of mashed potatoes and 7 or 8 bites of mac & cheese. She has also had about 1 full serving of yougurt and consumed one bottle of red Gatorade. This may not sound like much to you but for someone whose last encounter with real food was 20 days ago, we think it's a huge step in the right direction.
The energy level continues to be greatly reduced from when I left her last Monday to visit the kids for a few days and she still struggles some with getting longer periods of continuous sleep (meaning > 1.5 to 2 hours at a time). She did get 3 walks in today, to the end of the hall back past the nurses station around the staff elevators before returning to her room. Again, another step in the right direction.
Some pain remains (she says 3 on a scale of 1-10) but she hasn't taken any pain medicine for the last day+ because it seems to add to the nausea. The nausea remains a bit frustrating but there has been only one instance of vomiting in the last 48 hours, and that may have been a blessing in disguise. As I was heading out the door for breakfast this morning, I heard her call my name out with a sense of urgency. It seems out of the blue, her heart decided to have one of its SVT episodes. She's had these off and on in the past but it's always a little scary. Her heart goes from beating normally to beating 190 beats per minute this morning. You can see the veins in her neck pounding so fast. The doctors came in and were going to give it a few minutes to correct itself. If it didn't they said they would cardiovert with adensonine. She's had this done twice in the past. Essentially, they stop your heart for a second to get it back in the right rhythm. It's not too bad except for the eerie feeling that you're dying and the fact they have a crash cart right there in case your heart doesn't decide to start again on its own. Anyway, none of that was necessary since right after the well-timed aforementioned vomiting episode, her heart rate returned to a much more acceptable 95 beats per minute.
All in all a low-key day, but she did begin listening to music on the Ipod and even watched a couple of DVD episodes of the Sopranos on the computer. This was the first time since the surgery I think that any kind of TV show has been watched. The TV hasn't been on because that would mean moving the pictures of her 3 lovely children from their prominent spot in front of the screen.
She of course misses the kids more each day and can't wait for this exile to end. We treasure the few brief minutes we get to hear their voices each night. How lucky I was to be able to hold them in my arms and tuck them into bed a few times this week on my all-too-short visit home. But we know the triumphant return is nearing and that the hugs and smiles and laughter of those most precious to us await. And that, my friends, is sufficient to sustain us through all sorts of trials.
There have been some signs of improvement since the last post. She has begun sampling a few of the delicacies of the WHC cafeteria. She has managed to keep down about 4 bites of mashed potatoes and 7 or 8 bites of mac & cheese. She has also had about 1 full serving of yougurt and consumed one bottle of red Gatorade. This may not sound like much to you but for someone whose last encounter with real food was 20 days ago, we think it's a huge step in the right direction.
The energy level continues to be greatly reduced from when I left her last Monday to visit the kids for a few days and she still struggles some with getting longer periods of continuous sleep (meaning > 1.5 to 2 hours at a time). She did get 3 walks in today, to the end of the hall back past the nurses station around the staff elevators before returning to her room. Again, another step in the right direction.
Some pain remains (she says 3 on a scale of 1-10) but she hasn't taken any pain medicine for the last day+ because it seems to add to the nausea. The nausea remains a bit frustrating but there has been only one instance of vomiting in the last 48 hours, and that may have been a blessing in disguise. As I was heading out the door for breakfast this morning, I heard her call my name out with a sense of urgency. It seems out of the blue, her heart decided to have one of its SVT episodes. She's had these off and on in the past but it's always a little scary. Her heart goes from beating normally to beating 190 beats per minute this morning. You can see the veins in her neck pounding so fast. The doctors came in and were going to give it a few minutes to correct itself. If it didn't they said they would cardiovert with adensonine. She's had this done twice in the past. Essentially, they stop your heart for a second to get it back in the right rhythm. It's not too bad except for the eerie feeling that you're dying and the fact they have a crash cart right there in case your heart doesn't decide to start again on its own. Anyway, none of that was necessary since right after the well-timed aforementioned vomiting episode, her heart rate returned to a much more acceptable 95 beats per minute.
All in all a low-key day, but she did begin listening to music on the Ipod and even watched a couple of DVD episodes of the Sopranos on the computer. This was the first time since the surgery I think that any kind of TV show has been watched. The TV hasn't been on because that would mean moving the pictures of her 3 lovely children from their prominent spot in front of the screen.
She of course misses the kids more each day and can't wait for this exile to end. We treasure the few brief minutes we get to hear their voices each night. How lucky I was to be able to hold them in my arms and tuck them into bed a few times this week on my all-too-short visit home. But we know the triumphant return is nearing and that the hugs and smiles and laughter of those most precious to us await. And that, my friends, is sufficient to sustain us through all sorts of trials.
Friday, August 07, 2009
Another brief update by Br'er Liar
Lisa Marie went for a short walk yesterday. She also went for a similarly short walk today to the end of the hall. The emphasis is on the word short, particularly when compared to the walks she went on earlier this week. The past thrice daily walks to the furthest point in the hospital (information desk) are about 420 of my steps each way (to say nothing of the shorter steps of baby sibling), whereas the walk to the end of the hallway is only about 30 steps each way. I'm sorry I can not be more exact, but retard elder brother keeps forgetting or failing to locate a pedometer at the two different Targets shopped at so far.
Any way, no significant change. Lisa Marie typically feels cold after leaving the bed, whether it be for a short walk down the hall, or simply going to the bathroom. Sean puts on her sheet and then her blanket, and then within a few minutes she is hot and wants the blanket off. To the extent that many of these symptoms are in fact withdrawal syndrome related from the end of the fentanyl citrate solution's availability, it would appear that they are lasting more than 48 hours.
Lisa Marie went for a short walk yesterday. She also went for a similarly short walk today to the end of the hall. The emphasis is on the word short, particularly when compared to the walks she went on earlier this week. The past thrice daily walks to the furthest point in the hospital (information desk) are about 420 of my steps each way (to say nothing of the shorter steps of baby sibling), whereas the walk to the end of the hallway is only about 30 steps each way. I'm sorry I can not be more exact, but retard elder brother keeps forgetting or failing to locate a pedometer at the two different Targets shopped at so far.
Any way, no significant change. Lisa Marie typically feels cold after leaving the bed, whether it be for a short walk down the hall, or simply going to the bathroom. Sean puts on her sheet and then her blanket, and then within a few minutes she is hot and wants the blanket off. To the extent that many of these symptoms are in fact withdrawal syndrome related from the end of the fentanyl citrate solution's availability, it would appear that they are lasting more than 48 hours.
A brief update by Br'er Liar
There is little change in Lisa Marie's condition in that she continues to experience nausea and remains listless. The latter may be due to dehydration so they are continuing the influx of fluids via the IV line. From my admittedly brief observation since arriving this morning she does appear somewhat more comfortable. She is neither moaning nor openly expressing her discomfort via yelps that yesterday escaped her lips despite attempts to maintain her stoic demeanor.
On a positive note, Sean arrived safely at BWI on Thursday afternoon and was delivered to the hospital room (sans bow or wrapping paper) by 4 p.m. Sean tapped into the ring and Katy tapped out for her 5-6 hour drive home. Many thanks to Katy for her kindness in attending to Lisa Marie since last Friday.
To further attempt the window dressing of a positive attitude I note that Lisa Marie has not vomited since 2:30 a.m. (Friday morning). Moreover, for all you medical devotees out there, the vomit did not show signs of blood or any other types of discoloration evidencing a serious problem. Instead the vomit merely appears to be regurgitated bile products. Furthermore, in case we failed to mention it previously, Lisa Marie is down to one drain and despite the nausea continues to demonstrate the positive sign of being able to pass gas and/or experience bowel movements.
There is little change in Lisa Marie's condition in that she continues to experience nausea and remains listless. The latter may be due to dehydration so they are continuing the influx of fluids via the IV line. From my admittedly brief observation since arriving this morning she does appear somewhat more comfortable. She is neither moaning nor openly expressing her discomfort via yelps that yesterday escaped her lips despite attempts to maintain her stoic demeanor.
On a positive note, Sean arrived safely at BWI on Thursday afternoon and was delivered to the hospital room (sans bow or wrapping paper) by 4 p.m. Sean tapped into the ring and Katy tapped out for her 5-6 hour drive home. Many thanks to Katy for her kindness in attending to Lisa Marie since last Friday.
To further attempt the window dressing of a positive attitude I note that Lisa Marie has not vomited since 2:30 a.m. (Friday morning). Moreover, for all you medical devotees out there, the vomit did not show signs of blood or any other types of discoloration evidencing a serious problem. Instead the vomit merely appears to be regurgitated bile products. Furthermore, in case we failed to mention it previously, Lisa Marie is down to one drain and despite the nausea continues to demonstrate the positive sign of being able to pass gas and/or experience bowel movements.
Thursday, August 06, 2009
No rest for the weary…
(Authored by Kate the Kind) (posted by Br’er Liar)
I thought that 11:30pm to 1:30am was going to be the worst of it for my shift. Unfortunately, this was not the case. She slept until 4:30a.m. waking up in such pain (shoulder and back) and waves of nausea that she could not return to slumber. She could not even find a comfortable position in which to lie. 5:50am Zofran, no change. After I made two frantic nurse calls, they finally came to see for themselves how much she needed relief and that I was not going to stop pushing the call bell until they did SOMETHING! At 6:15a.m., the nurse arrived with a different pain medication - Dilodin (morphine derivative, I believe). Apparently this was chosen to provide a “breakthrough pain med to assist with Fentanyl withdrawal” (when did they decide she was in withdrawal???) This was a feeble attempt, at best, and actually ended up worsening an already bad situation. Dilodin was absolutely awful. Instead of pain relief, for which it was intended, horrible stomach cramping ensued. More vomiting. Exacerbated her shoulder pain, pain at abdominal incision and JP drain sites…
8a.m. Rounds: Docs decided that additional blood testing is to be done today (to check liver, pancreas, thyroid) to determine what is the source of this constant nausea. They also decided that two of the three remaining JP drains will be removed. The hope is that removal of these drains will quell some of the referred shoulder pain. When I reported to the profuse sweating that endured through the night, the “rounds team” reinforced that this symptom is more likely related to withdrawal from pain meds (fentanyl) than removal of ovaries. OK, so now they give these horrid symptoms a name: withdrawal syndrome. It could last 48 hours, but it will end, we’re assured.
9:30a.m. Painful removal of 2 of the 3 remaining JP drains (the last is still draining too much to be removed), but hopefully the pain will be worthwhile to get rid of the shoulder pain… we’ll see. Doc OK’d another med for nausea, since the Zofran isn’t cutting it.
9:40am She’s vomiting again. She’ll get the new anti-nausea in about a ½ hour. Discussed lack of clear liquid diet consumption with the doc and nurse… They are wondering why she’s not drinking anything. Um, hello, have you heard her report her nausea for the last 12 hours???? And, no, she won’t drink chicken soup, and the juice acidity will aggravate an already sour stomach. What’s plan B, folks?
9:45a.m. Yet another tray of clear liquids left room 2NW 20 without one thing consumed. I think we’re now all agreed that clear liquids are not a good choice. Mindy (favored nurse from previous post) thinks mashed potatoes (part of a FULL liquid diet, as opposed to clear liquid diet) are in LMs future.
10:00am Doc reports that LMs white blood cell count is UP! It was 2.7 and is now 14. Doc is very pleased with this. Unfortunately, LM is still too ill to be excited about this step forward.
10:15am Here comes Mindy again. She brings Fenigren, a different type of anti-nausea med, which doc who removed JP drains had promised. It burns going in, but it has a desirable side effect: sleepiness. Much deserved.
10:45 No longer writhing in pain or vomiting, but not yet in the peaceful sleep state we desire… keep your fingers crossed.
The plan for the rest of this Thursday: Sleep. Sleep. A little food, a little walking. Repeat.
Best part of this Thursday for LM? Sean is due back around 4pm.
A slight addition by Br’er Liar:
It never ceases to amaze me how little common sense some professionals apply to their job. The medical personnel act as if the fact that a clear liquid diet was authorized means that it necessarily: (a) is provided; and, (b) is consumed. Despite things such as ongoing nausea and the sweating and the pain and all sorts of minor discomforts, some people act as if their authorization/order on the chart means that must have occurred. I am just so relieved that Kate was present to act as Lisa Marie’s advocate.
There are the minor conveniences of having a bedside assistant in the form of a friend or relative present at all times. Let me note a few (all of which I have observed Kate and Sean provide in the past two weeks). Someone to put on and remove the inflatable cuffs. Someone to massage your shoulder. Someone to push the pain button periodically while you are sleeping (screw the rules against that particular practice). Someone to gather the materials for a self-administered sponge bath. Someone to hit silence while tracing the line to remove a distal occlusion on one or more of the pumps. Alternatively, someone to hit the silence button on all the machines until the nurse comes to change an empty bag. Someone to unplug the machines when you go to the bathroom or go for a walk. Someone to bring you a toothbrush, toothpaste and a basin to spit in. Someone to turn up the suction on your NG tube to clear an obstruction. Someone to push the nurse call button and talk when the patient’s voice has given out or is too hoarse and raspy to hear through the microphone on the bed. Someone to bring you skin lotions, and moist wipes, and shampoo or conditioner. Someone to help you wash your hair. Someone to hand you your comb and brush. Someone to adjust the fan to cool you off, or to open and close the door to provide fresher air. Someone to hand you the phone when a call comes in and you are conscious and able to speak. Someone to hand you a basin when you vomit. Someone to hand you a rinse cup to get the taste of vomit out of your mouth.
All of the above is just the rapid product of stream of consciousness. If I sat here for 5-10 minutes I am confident I could double, treble or even quadruple the number of things listed as there is more. But note the point is that these are merely minor conveniences. The reality is that the major convenience is a full time patient advocate. Because: (1) even if you are a highly educated Mistress of the Alchemical Arts; (2) even if you have read everything you can lay your hands on about cancer treatment and care; (3) even if you have already spent a few weeks in a hospital earlier in the year and know some of the ins and outs; it just does not cut it. You are sick and you are unable to even make your needs clear with sufficient vigor and force to penetrate the shell that medical personnel, who see sickness and suffering every day, have surrounded themselves with in an undoubted attempt to avoid being overwhelmed by the misery of it all. Whether it is continuing to push the nurse call button until you get their attention, arguing with the director of nursing to get the heck out of the ICU, or arguing with the doctors about needing pain or nausea relief NOW.
Please excuse me, it is 11:35 a.m. and Lisa Marie is vomiting again.
(Authored by Kate the Kind) (posted by Br’er Liar)
I thought that 11:30pm to 1:30am was going to be the worst of it for my shift. Unfortunately, this was not the case. She slept until 4:30a.m. waking up in such pain (shoulder and back) and waves of nausea that she could not return to slumber. She could not even find a comfortable position in which to lie. 5:50am Zofran, no change. After I made two frantic nurse calls, they finally came to see for themselves how much she needed relief and that I was not going to stop pushing the call bell until they did SOMETHING! At 6:15a.m., the nurse arrived with a different pain medication - Dilodin (morphine derivative, I believe). Apparently this was chosen to provide a “breakthrough pain med to assist with Fentanyl withdrawal” (when did they decide she was in withdrawal???) This was a feeble attempt, at best, and actually ended up worsening an already bad situation. Dilodin was absolutely awful. Instead of pain relief, for which it was intended, horrible stomach cramping ensued. More vomiting. Exacerbated her shoulder pain, pain at abdominal incision and JP drain sites…
8a.m. Rounds: Docs decided that additional blood testing is to be done today (to check liver, pancreas, thyroid) to determine what is the source of this constant nausea. They also decided that two of the three remaining JP drains will be removed. The hope is that removal of these drains will quell some of the referred shoulder pain. When I reported to the profuse sweating that endured through the night, the “rounds team” reinforced that this symptom is more likely related to withdrawal from pain meds (fentanyl) than removal of ovaries. OK, so now they give these horrid symptoms a name: withdrawal syndrome. It could last 48 hours, but it will end, we’re assured.
9:30a.m. Painful removal of 2 of the 3 remaining JP drains (the last is still draining too much to be removed), but hopefully the pain will be worthwhile to get rid of the shoulder pain… we’ll see. Doc OK’d another med for nausea, since the Zofran isn’t cutting it.
9:40am She’s vomiting again. She’ll get the new anti-nausea in about a ½ hour. Discussed lack of clear liquid diet consumption with the doc and nurse… They are wondering why she’s not drinking anything. Um, hello, have you heard her report her nausea for the last 12 hours???? And, no, she won’t drink chicken soup, and the juice acidity will aggravate an already sour stomach. What’s plan B, folks?
9:45a.m. Yet another tray of clear liquids left room 2NW 20 without one thing consumed. I think we’re now all agreed that clear liquids are not a good choice. Mindy (favored nurse from previous post) thinks mashed potatoes (part of a FULL liquid diet, as opposed to clear liquid diet) are in LMs future.
10:00am Doc reports that LMs white blood cell count is UP! It was 2.7 and is now 14. Doc is very pleased with this. Unfortunately, LM is still too ill to be excited about this step forward.
10:15am Here comes Mindy again. She brings Fenigren, a different type of anti-nausea med, which doc who removed JP drains had promised. It burns going in, but it has a desirable side effect: sleepiness. Much deserved.
10:45 No longer writhing in pain or vomiting, but not yet in the peaceful sleep state we desire… keep your fingers crossed.
The plan for the rest of this Thursday: Sleep. Sleep. A little food, a little walking. Repeat.
Best part of this Thursday for LM? Sean is due back around 4pm.
A slight addition by Br’er Liar:
It never ceases to amaze me how little common sense some professionals apply to their job. The medical personnel act as if the fact that a clear liquid diet was authorized means that it necessarily: (a) is provided; and, (b) is consumed. Despite things such as ongoing nausea and the sweating and the pain and all sorts of minor discomforts, some people act as if their authorization/order on the chart means that must have occurred. I am just so relieved that Kate was present to act as Lisa Marie’s advocate.
There are the minor conveniences of having a bedside assistant in the form of a friend or relative present at all times. Let me note a few (all of which I have observed Kate and Sean provide in the past two weeks). Someone to put on and remove the inflatable cuffs. Someone to massage your shoulder. Someone to push the pain button periodically while you are sleeping (screw the rules against that particular practice). Someone to gather the materials for a self-administered sponge bath. Someone to hit silence while tracing the line to remove a distal occlusion on one or more of the pumps. Alternatively, someone to hit the silence button on all the machines until the nurse comes to change an empty bag. Someone to unplug the machines when you go to the bathroom or go for a walk. Someone to bring you a toothbrush, toothpaste and a basin to spit in. Someone to turn up the suction on your NG tube to clear an obstruction. Someone to push the nurse call button and talk when the patient’s voice has given out or is too hoarse and raspy to hear through the microphone on the bed. Someone to bring you skin lotions, and moist wipes, and shampoo or conditioner. Someone to help you wash your hair. Someone to hand you your comb and brush. Someone to adjust the fan to cool you off, or to open and close the door to provide fresher air. Someone to hand you the phone when a call comes in and you are conscious and able to speak. Someone to hand you a basin when you vomit. Someone to hand you a rinse cup to get the taste of vomit out of your mouth.
All of the above is just the rapid product of stream of consciousness. If I sat here for 5-10 minutes I am confident I could double, treble or even quadruple the number of things listed as there is more. But note the point is that these are merely minor conveniences. The reality is that the major convenience is a full time patient advocate. Because: (1) even if you are a highly educated Mistress of the Alchemical Arts; (2) even if you have read everything you can lay your hands on about cancer treatment and care; (3) even if you have already spent a few weeks in a hospital earlier in the year and know some of the ins and outs; it just does not cut it. You are sick and you are unable to even make your needs clear with sufficient vigor and force to penetrate the shell that medical personnel, who see sickness and suffering every day, have surrounded themselves with in an undoubted attempt to avoid being overwhelmed by the misery of it all. Whether it is continuing to push the nurse call button until you get their attention, arguing with the director of nursing to get the heck out of the ICU, or arguing with the doctors about needing pain or nausea relief NOW.
Please excuse me, it is 11:35 a.m. and Lisa Marie is vomiting again.
Do you hear what I hear?? (at 1:20AM)
Kate here. I know that it's not just me. I know that each of you will be just as perplexed/annoyed/angered, or INSENSED!!! to learn that there is someone in this hospital who thinks it's a good idea to have hospital floors cleaned during the 11pm to 7am shift. And I'm not just talking about the floors in the long hallways, I'm talking about the floors that lie, literally, UNDER LMs door, being cleaned with a machine that sounds like a Mack truck. When I questioned the poor soul whose job it is to complete this duty at such an ungodly hour, he told me that this "intense cleaning" only gets done twice a month. How lucky we are that his twice a month schedule overlapped with her stay here...
While I was able to convince LM to take a short walk around 9:30pm, and she experienced several successful trips to/from the bathroom, tonight has been the worst night with her since my arrival last Friday. She has been desperately chasing sleep in the last couple of hours and finally found it about 20 minutes ago. She has been sweating profusely (PA Gary seems to think related to oophrectomy), causing her to want to simultaneously be covered and uncovered with a blanket - if she lifts the blanket, she's freezing, but she's burning up when she's covered. (Temp and BP are being monitored and nothing out of the ordinary has been noted). "Reference" pain in her shoulder and now also in her back are contributing to lack of sleep. I'm no Reiki healer, but I hope that my modest hands have been a comfort to her in these areas.
In addition to pain, nausea continues to be a problem - she can have Zofran every 6 hours and got some around midnight. She was due for percocet at 11:30pm, but wanted to wait for it until after the Zofran kicked in. She managed to choke down her Percocet about 12:30a.m. I'm torn about whether I'll wake her at 4:30am (percocet can be given every 4 hours)to ask if she wants another, knowing that if she wants to first take Zofran, she'll have to wait until 6am. I miss her PCA button (though surely not as much as she).
Be assured that pain, nausea, and sweating will be topic priorities during the 6:30am rounds with her care team.
Sean is to return around 4pm this afternoon and I will go home after a week of watching what no friend should have to witness another friend endure. I am thankful that I could be here for her, but, like the rest of you, I can't wait to hear news that she is well enough to leave. I know that Sean and Art will continue to provide excellent care of her. We are all extremely grateful to them for this.
For those of you who write comments on her blog... by doing so, you provide reassurance and love to her and to those caring for her. Keep them coming.
Upon my arrival last week, there was a note on LMs door that stated, "Do not disturb, patient is sleeping... except Art and Kate". The sign continues to be used from time to time. Before I leave tomorrow, I may alter it to be more specific, "DO NOT CLEAN THE FLOORS at 1 a.m., patient is sleeping. NO exceptions".
Kate here. I know that it's not just me. I know that each of you will be just as perplexed/annoyed/angered, or INSENSED!!! to learn that there is someone in this hospital who thinks it's a good idea to have hospital floors cleaned during the 11pm to 7am shift. And I'm not just talking about the floors in the long hallways, I'm talking about the floors that lie, literally, UNDER LMs door, being cleaned with a machine that sounds like a Mack truck. When I questioned the poor soul whose job it is to complete this duty at such an ungodly hour, he told me that this "intense cleaning" only gets done twice a month. How lucky we are that his twice a month schedule overlapped with her stay here...
While I was able to convince LM to take a short walk around 9:30pm, and she experienced several successful trips to/from the bathroom, tonight has been the worst night with her since my arrival last Friday. She has been desperately chasing sleep in the last couple of hours and finally found it about 20 minutes ago. She has been sweating profusely (PA Gary seems to think related to oophrectomy), causing her to want to simultaneously be covered and uncovered with a blanket - if she lifts the blanket, she's freezing, but she's burning up when she's covered. (Temp and BP are being monitored and nothing out of the ordinary has been noted). "Reference" pain in her shoulder and now also in her back are contributing to lack of sleep. I'm no Reiki healer, but I hope that my modest hands have been a comfort to her in these areas.
In addition to pain, nausea continues to be a problem - she can have Zofran every 6 hours and got some around midnight. She was due for percocet at 11:30pm, but wanted to wait for it until after the Zofran kicked in. She managed to choke down her Percocet about 12:30a.m. I'm torn about whether I'll wake her at 4:30am (percocet can be given every 4 hours)to ask if she wants another, knowing that if she wants to first take Zofran, she'll have to wait until 6am. I miss her PCA button (though surely not as much as she).
Be assured that pain, nausea, and sweating will be topic priorities during the 6:30am rounds with her care team.
Sean is to return around 4pm this afternoon and I will go home after a week of watching what no friend should have to witness another friend endure. I am thankful that I could be here for her, but, like the rest of you, I can't wait to hear news that she is well enough to leave. I know that Sean and Art will continue to provide excellent care of her. We are all extremely grateful to them for this.
For those of you who write comments on her blog... by doing so, you provide reassurance and love to her and to those caring for her. Keep them coming.
Upon my arrival last week, there was a note on LMs door that stated, "Do not disturb, patient is sleeping... except Art and Kate". The sign continues to be used from time to time. Before I leave tomorrow, I may alter it to be more specific, "DO NOT CLEAN THE FLOORS at 1 a.m., patient is sleeping. NO exceptions".
Wednesday, August 05, 2009
Br'er Liar speaks again
Okay, after all the bad news of the day I am pleased to report that when the second pain pill kicked in it got Lisa Marie's pain under control. Rather than laying there sweating as she dealt with the pain, she is now resting comfortably. This is a good thing as the first two gowns of the day were so soaked with sweat that she had to change out of them (and the linens were kind of unpleasant until I changed them). But she is sleeping right now. Hopefully after the next round of painkillers (in another 35 minutes or so) she might even go for a walk. At present the only activities of the day were a sponge bath she gave herself and a few trips to the bathroom.
Katy the Kind is due to show up in another half hour or so. Thus, this may be my last update of the day. Thanks to all for flowers, kind wishes, useful suggestions, prayers, and every other form of support shown to Lisa Marie the past two weeks.
Okay, after all the bad news of the day I am pleased to report that when the second pain pill kicked in it got Lisa Marie's pain under control. Rather than laying there sweating as she dealt with the pain, she is now resting comfortably. This is a good thing as the first two gowns of the day were so soaked with sweat that she had to change out of them (and the linens were kind of unpleasant until I changed them). But she is sleeping right now. Hopefully after the next round of painkillers (in another 35 minutes or so) she might even go for a walk. At present the only activities of the day were a sponge bath she gave herself and a few trips to the bathroom.
Katy the Kind is due to show up in another half hour or so. Thus, this may be my last update of the day. Thanks to all for flowers, kind wishes, useful suggestions, prayers, and every other form of support shown to Lisa Marie the past two weeks.
And the pain continues
So we counted down the seconds and shortly after 2:30 p.m. got another Percocet. As these pills also appeared inadequate to some of our readers some helpful advice was offered by one via phone of perhaps asking for Toradol. The phone call was well timed as shortly thereafter the doctor came by to let us know that the letter had come in from the insurance company approving the past shot (this past Friday) and two more shots of Neupogen. Lisa Marie will thus be getting two more shots in the near future. This is apparently not of great concern except at pertains to room hygience and the presence of fruit or flowers (more on that later).
Lisa Marie has continued to be listless the entire day as she struggles with pain/discomfort. On the 1-10 scale her pain has been a minimum of 6 for most of the day and has been 7 of late. So naturally Br'er Liar took advantage of the doctor's presence to begin gently lobbying in the pain relief department. Getting the song and dance about how she is now on Percocet and has to ask for it, it was necessary to cut that conversation short as rapidly as possible. So Br'er Liar rather bluntly noted that she had one pill at 10:30 a.m., another at 2:30 p.m. but was still in pain at levels of six or higher all day. Yes, yes yes being on oral medication might be necessary for her to eventually get discharged. However, Lisa Marie's pain level was preventing her from walking at all (down from 3 or more long walks a day). The no walking bit finally got through and the doctor questioned today's nurse (Brandi) and confirmed the details of past pain relief for the day. He emphasized the importance of getting up and walking when possible, even if only a little bit. At that point he said he would get right on the pain issue, and shortly thereater Brandi came in with a little pill cup with what I presume is another percocet.
Lisa Marie took her pill and managed not to vomit it back up. Due to the nausea she asked for some more Zofran. The syringe got hooked in but Lisa Marie began crying out in pain as it was being administered. So the Zofran took about 5 minutes to inject slowly. So there may be a problem with the current IV line or it may be inflammation of the vein resulting from the admininistration of medications. Brandi maintains that before the Zofran the arm was improved in color, and that it had colored somewhat in a similar fashion this morning after the administration of Benadryl. Regardless, another poking of the vein is currently underway as I type this language. Well, sort of underway as Lisa Marie's pain level must be down as she is gently remonstrating (quoting Sean, stop laughing Vito) with the very soft spoken woman of Asiatic descent. The conclusion of the story is that the IV has been successfully moved from her left arm to her right arm. Her left arm was hurting quite badly.
All in all this has been a rotten day for Lisa Marie. Yes she is probably in the home stretch we really have to hope that this second pain pill (taken at about 3:23) kicks in soon. As of 3:53 the pain does appear to have begun decreasing.
As Lisa Marie is getting more Neupogen she is banned from having fresh fruits or flowers around so all the pretty flowers are exiting the room shortly. DO NOT SEND ANY MORE FLOWERS FOR THE DURATION IN VIEW OF THE BAN ON FRESH FRUITS AND FLOWERS IN THE ROOM. Dear me, even as I type this another batch of yellow flowers are on their way into the room. . . Lisa Marie appreciates the thought even though they only add to the visitor sitting room beautification project at this point.
So we counted down the seconds and shortly after 2:30 p.m. got another Percocet. As these pills also appeared inadequate to some of our readers some helpful advice was offered by one via phone of perhaps asking for Toradol. The phone call was well timed as shortly thereafter the doctor came by to let us know that the letter had come in from the insurance company approving the past shot (this past Friday) and two more shots of Neupogen. Lisa Marie will thus be getting two more shots in the near future. This is apparently not of great concern except at pertains to room hygience and the presence of fruit or flowers (more on that later).
Lisa Marie has continued to be listless the entire day as she struggles with pain/discomfort. On the 1-10 scale her pain has been a minimum of 6 for most of the day and has been 7 of late. So naturally Br'er Liar took advantage of the doctor's presence to begin gently lobbying in the pain relief department. Getting the song and dance about how she is now on Percocet and has to ask for it, it was necessary to cut that conversation short as rapidly as possible. So Br'er Liar rather bluntly noted that she had one pill at 10:30 a.m., another at 2:30 p.m. but was still in pain at levels of six or higher all day. Yes, yes yes being on oral medication might be necessary for her to eventually get discharged. However, Lisa Marie's pain level was preventing her from walking at all (down from 3 or more long walks a day). The no walking bit finally got through and the doctor questioned today's nurse (Brandi) and confirmed the details of past pain relief for the day. He emphasized the importance of getting up and walking when possible, even if only a little bit. At that point he said he would get right on the pain issue, and shortly thereater Brandi came in with a little pill cup with what I presume is another percocet.
Lisa Marie took her pill and managed not to vomit it back up. Due to the nausea she asked for some more Zofran. The syringe got hooked in but Lisa Marie began crying out in pain as it was being administered. So the Zofran took about 5 minutes to inject slowly. So there may be a problem with the current IV line or it may be inflammation of the vein resulting from the admininistration of medications. Brandi maintains that before the Zofran the arm was improved in color, and that it had colored somewhat in a similar fashion this morning after the administration of Benadryl. Regardless, another poking of the vein is currently underway as I type this language. Well, sort of underway as Lisa Marie's pain level must be down as she is gently remonstrating (quoting Sean, stop laughing Vito) with the very soft spoken woman of Asiatic descent. The conclusion of the story is that the IV has been successfully moved from her left arm to her right arm. Her left arm was hurting quite badly.
All in all this has been a rotten day for Lisa Marie. Yes she is probably in the home stretch we really have to hope that this second pain pill (taken at about 3:23) kicks in soon. As of 3:53 the pain does appear to have begun decreasing.
As Lisa Marie is getting more Neupogen she is banned from having fresh fruits or flowers around so all the pretty flowers are exiting the room shortly. DO NOT SEND ANY MORE FLOWERS FOR THE DURATION IN VIEW OF THE BAN ON FRESH FRUITS AND FLOWERS IN THE ROOM. Dear me, even as I type this another batch of yellow flowers are on their way into the room. . . Lisa Marie appreciates the thought even though they only add to the visitor sitting room beautification project at this point.
The name of the game remains pain.
So it is Wednesday morning and Br'er Liar has returned to dungeon room NW20 here at the WHC. While Lisa Marie received the expert care and compassion we have come to expect from her pal Kate the Kind, the fact remains that at some point in the past 12hours the relevant hospital personnel have absconded with her pain pump. More specifically, about 10:20 a.m the nurse (Brandi) took it and at 10:30 a.m. Lisa Marie got a Percocet. Needless to say that referring to this as causing Lisa Marie some discomfort is similar to referring to Rwanda having a small problem concerning people with machetes.
So basically, while there are some clear juices in the room for Lisa Marie to consume she is disinterested in drinkin the same. She does not want to go for any more walks because of the pain. In fact, when I walked in the door she opened her eyes and looked at me rather dismissively. Upon further examination I determined that was not a dismissive look, but simply the appearance of someone whose face is all scrunched up from being in pain. I know that everyone says that pain is preferable to nausea, but unlike nausea pain is more easily managed. . . So I will give this a day to see if Percocet is adequate to the task. If it fails to manage pain then I will of course be forced to initiate the slowly escalating levels of demands for better pain management. We can hope that it does not reach the level of unholy ruckus that those who know and love me see once a while as the shining example of my undersocialized self.
Despite being informed by Kate the Kind that Lisa Marie slept better last night, she looks exhausted and as beat up as any day other than her wonderful interlude in the ICU. See her posted pictures in posts below for the details of the new "in" look of puffy eyelids. While Lisa Marie no longer resembles someone struck by the entire fleet of Ryder trucks, she is definitely in pain. Suffice it to say that I am counting down the 213 minutes until she can have another Percocet. Or maybe that should be 12,780 seconds?
So it is Wednesday morning and Br'er Liar has returned to dungeon room NW20 here at the WHC. While Lisa Marie received the expert care and compassion we have come to expect from her pal Kate the Kind, the fact remains that at some point in the past 12hours the relevant hospital personnel have absconded with her pain pump. More specifically, about 10:20 a.m the nurse (Brandi) took it and at 10:30 a.m. Lisa Marie got a Percocet. Needless to say that referring to this as causing Lisa Marie some discomfort is similar to referring to Rwanda having a small problem concerning people with machetes.
So basically, while there are some clear juices in the room for Lisa Marie to consume she is disinterested in drinkin the same. She does not want to go for any more walks because of the pain. In fact, when I walked in the door she opened her eyes and looked at me rather dismissively. Upon further examination I determined that was not a dismissive look, but simply the appearance of someone whose face is all scrunched up from being in pain. I know that everyone says that pain is preferable to nausea, but unlike nausea pain is more easily managed. . . So I will give this a day to see if Percocet is adequate to the task. If it fails to manage pain then I will of course be forced to initiate the slowly escalating levels of demands for better pain management. We can hope that it does not reach the level of unholy ruckus that those who know and love me see once a while as the shining example of my undersocialized self.
Despite being informed by Kate the Kind that Lisa Marie slept better last night, she looks exhausted and as beat up as any day other than her wonderful interlude in the ICU. See her posted pictures in posts below for the details of the new "in" look of puffy eyelids. While Lisa Marie no longer resembles someone struck by the entire fleet of Ryder trucks, she is definitely in pain. Suffice it to say that I am counting down the 213 minutes until she can have another Percocet. Or maybe that should be 12,780 seconds?
Tuesday, August 04, 2009
Another quick post by Br'er Liar
So a favored nurse Mindy had the 7 a.m. to 3 p.m. shift today. In a transparent attempt to part on a bad note to make up for her otherwise sterling behavior in the past week, Mindy waited until near the end of her shift to remove the urinary catheter. Did everyone hear that yell in their respective states? But more than the lingering twinges of that particular sharp pang is the fact that they are rather precipitously lowering the dosage on the pain pump. It is a major hassle because Lisa Marie wakes up from naps in pain unless someone is pushing the pain pump button for her in her sleep.
We are down from yesterday's (lowered) amount of 30 mcg per hour maintenance infusion and 25 mcg per push of the button (possible every 6 minutes) to 10 mcg per hour maintenance infusion and 10 mcg per push of the button. This has been somewhat inadequate to the task at times. It is more than a bit inconsistent to refer to some advice as comprising mutually incosistent positions for her to need longer sleep periods to get to the deeper periods of sleep while simultaneously having constant interruptions and now reduced unprompted infusions of pain medication. I have to this point resisted the tempation to attempt to surreptitiously reprogram the pain pump, but the possibility remains on the horizon.
So she is much transformed from the octopuspider of last week. Only a small fraction of the lines and tubes of just a few days ago continue to emanate forth from Lisa Marie's weary and wounded frame. With clear fluids and solid foods off somewhere in the horizon I am hopeful for a discharge this weekend followed by a return to Houston within 24 or less hours. A return to a bedroom invaded not by nurses, but by snuggling offspring in the form of Hayden Swat King, Trevor Gaptooth, and Juliette the Cute. When instead of being inspired by pictures of her children, Lisa Marie can again cuddle with the real thing.
So a favored nurse Mindy had the 7 a.m. to 3 p.m. shift today. In a transparent attempt to part on a bad note to make up for her otherwise sterling behavior in the past week, Mindy waited until near the end of her shift to remove the urinary catheter. Did everyone hear that yell in their respective states? But more than the lingering twinges of that particular sharp pang is the fact that they are rather precipitously lowering the dosage on the pain pump. It is a major hassle because Lisa Marie wakes up from naps in pain unless someone is pushing the pain pump button for her in her sleep.
We are down from yesterday's (lowered) amount of 30 mcg per hour maintenance infusion and 25 mcg per push of the button (possible every 6 minutes) to 10 mcg per hour maintenance infusion and 10 mcg per push of the button. This has been somewhat inadequate to the task at times. It is more than a bit inconsistent to refer to some advice as comprising mutually incosistent positions for her to need longer sleep periods to get to the deeper periods of sleep while simultaneously having constant interruptions and now reduced unprompted infusions of pain medication. I have to this point resisted the tempation to attempt to surreptitiously reprogram the pain pump, but the possibility remains on the horizon.
So she is much transformed from the octopuspider of last week. Only a small fraction of the lines and tubes of just a few days ago continue to emanate forth from Lisa Marie's weary and wounded frame. With clear fluids and solid foods off somewhere in the horizon I am hopeful for a discharge this weekend followed by a return to Houston within 24 or less hours. A return to a bedroom invaded not by nurses, but by snuggling offspring in the form of Hayden Swat King, Trevor Gaptooth, and Juliette the Cute. When instead of being inspired by pictures of her children, Lisa Marie can again cuddle with the real thing.
Good news. Despite my preference not to steal her thunder I am surreptitously posting this while Lisa Marie is distracted chatting with her friend Anne. After weening herself from her diet of guacamole milk shakes my stupendous sibling had the dreaded tube of NG removed today. Planned start on clear liquids tomorrow and solid food a day or two after that. Preliminary projections of escape from Alcatraz this weekend!!!! Wahoo!
To quote a song:
We gotta get out of this place
If its the last thing we ever do
To quote a song:
We gotta get out of this place
If its the last thing we ever do
Monday, August 03, 2009
Plugged...
So the doctors decided today to disconnect and plug my NG tube, despite the continued high bile output. If I throw up, then they conclude that I'm not ready to have the NG tube removed. If I don't vomit, apparently I'm ready for the tube to be extracted. Sounds highly scientific, doesn't it? But since they removed my nutrition line a week ago, they have to either pull my NG tube and start me on food, or reconnect the nutrition to my port. They really don't want to do that because they still suspect it to be infected.
So today has mostly been Vomit Watch 2009. Only slightly more exciting than the hurricane tracking on the Houston news channels.
Today has been my first day without Sean. He left me in the able care of my brother Art and my friend Kate. They did a stellar job. The kids were very surprised when Sean walked into the house at around 9 am this morning. I told them to expect a very special surprise that I was sending. Trevor had 2 comments when I asked him how he liked his surprise. "It was already all put together". My little Bob the Builder apparently prefers his toys with some assembly required. Then he said "Surprises are supposed to come wrapped in present paper". So if someone out there knows the best way to gift wrap a Daddy, let me know.
So the doctors decided today to disconnect and plug my NG tube, despite the continued high bile output. If I throw up, then they conclude that I'm not ready to have the NG tube removed. If I don't vomit, apparently I'm ready for the tube to be extracted. Sounds highly scientific, doesn't it? But since they removed my nutrition line a week ago, they have to either pull my NG tube and start me on food, or reconnect the nutrition to my port. They really don't want to do that because they still suspect it to be infected.
So today has mostly been Vomit Watch 2009. Only slightly more exciting than the hurricane tracking on the Houston news channels.
Today has been my first day without Sean. He left me in the able care of my brother Art and my friend Kate. They did a stellar job. The kids were very surprised when Sean walked into the house at around 9 am this morning. I told them to expect a very special surprise that I was sending. Trevor had 2 comments when I asked him how he liked his surprise. "It was already all put together". My little Bob the Builder apparently prefers his toys with some assembly required. Then he said "Surprises are supposed to come wrapped in present paper". So if someone out there knows the best way to gift wrap a Daddy, let me know.
Sunday, August 02, 2009
Setbacks....
Too much of this...
means no early release, despite all of my good behavior. The doctor said this morning that my bile output is still too high for my NG tube to be removed anytime soon. Which also means I won't be released anytime soon. So much for high hopes.
Otherwise, all is going well. Still walking, feeling pretty good, no fever for 2 days in a row.
The babies need some extra loving, so Sean is headed home tomorrow in my place. He'll return on Thursday. Art and my friend, Kate, will stay in his absence.
Hopefully I'll have better news to post tomorrow.
Saturday, August 01, 2009
Picture-Palooza...
Today was a pretty decent day. My friend Kate drove in last night and has brought much good cheer with her. She helped me win a battle over a PICC line last night (which I believe should not be inserted bedside) and we were rewarded with a perfect new IV this morning despite the fact that las night I was told there was not a vein to be found on either arm. Good friends near and far are lifting my spirits daily. I'm walking up a storm. Wish I had a pedometer to track, but I'm up to 4-5 brisk walks of 20-30 minutes each per day.
My days are brightened by the look and smell of lovely flowers such as these...
And the view at the foot of my bed is rather uplifting as well. Happy feet and lovely children continue to motivate me to try to get healthy and home as soon as possible.
Here are some of the gorey details. I started out with the following:
5) 1 central line, removed about 5 days after surgery.
So here's a little photo-montage of my journey. Here I am the morning of my surgery, only slightly apprehensive...
This is the first shot in the ICU while I still had the breathing tube. Perhaps not my finest super-model moment.
Day 2 in the ICU. Breathing tube is out, but really not looking a whole lot better. At least I can tell you that I felt better than I looked here.
Day 3, still in the ICU, but ready to hit the road. Trevor's doggie and I have become constant companions. He's the only one the nurses haven't tried to throw out of my room.
Day 4, out of the ICU and into a regular room. Don't Doggie and I look so much happier?
Day 5, starting to feel like myself again and styling in some fancy scrubs I bought on the internet in preparation for this extended hospitalization.
Day 6...Ahhh...finally back to the old me. Hope you don't mind that I photoshopped out the NG tube. It was just so unsightly and detracted from my otherwise lovely appearance.
And there you have it, my week in pictures. Be sure to go out on the internet and post some pictures of your worst days too. Because once it's on the internet, it lives forever.
Today was a pretty decent day. My friend Kate drove in last night and has brought much good cheer with her. She helped me win a battle over a PICC line last night (which I believe should not be inserted bedside) and we were rewarded with a perfect new IV this morning despite the fact that las night I was told there was not a vein to be found on either arm. Good friends near and far are lifting my spirits daily. I'm walking up a storm. Wish I had a pedometer to track, but I'm up to 4-5 brisk walks of 20-30 minutes each per day.
My days are brightened by the look and smell of lovely flowers such as these...
And the view at the foot of my bed is rather uplifting as well. Happy feet and lovely children continue to motivate me to try to get healthy and home as soon as possible.
Here are some of the gorey details. I started out with the following:1) 31 stitches down my abdomen. Basically split from top to bottom. Belly button permanently gone (it was mentioned in the biopsy report as one of the "samples" that were submitted for analysis)
2) 3 stitches to close my colostomy. Yay!
3) 6 Jackson-Pratt drains to remove blood and fluid collection from the various surgery sites.
4) 6 EKG leads so they can constantly monitor my heartrate and hassle me when I exert myself too much. They tell me the fastest way out of here is to walk-walk-walk, but if my heartrate hits 160 they want me to sit-sit-sit.
5) 1 central line, removed about 5 days after surgery.6) NOT a tracheotomy scar. Don't know what it is. Woke up with it in the ICU and nobody will fess us to having done it. Nice, eh?
7) Connection to my medi-port.
So here's a little photo-montage of my journey. Here I am the morning of my surgery, only slightly apprehensive...
This is the first shot in the ICU while I still had the breathing tube. Perhaps not my finest super-model moment.
Day 2 in the ICU. Breathing tube is out, but really not looking a whole lot better. At least I can tell you that I felt better than I looked here.
Day 3, still in the ICU, but ready to hit the road. Trevor's doggie and I have become constant companions. He's the only one the nurses haven't tried to throw out of my room.
Day 4, out of the ICU and into a regular room. Don't Doggie and I look so much happier?
Day 5, starting to feel like myself again and styling in some fancy scrubs I bought on the internet in preparation for this extended hospitalization.
Day 6...Ahhh...finally back to the old me. Hope you don't mind that I photoshopped out the NG tube. It was just so unsightly and detracted from my otherwise lovely appearance.
And there you have it, my week in pictures. Be sure to go out on the internet and post some pictures of your worst days too. Because once it's on the internet, it lives forever.
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