Mary is not getting better. And the outlook, based on the observed behavior of her body's functions, is very bleak.
As much as the doctors' tell me to be postive, I can also see it in their eyes. In the last 24 hours, their hope for Mary to recover has faded and is continuing to fade.
Maybe I can write more later, but right now I just want all of you to know things are not great. I need to be terse tonight, maybe I'll write more later.
Wednesday, March 31, 2010
Wednesday isn't better--so far
I arrived about 7:40AM and Mary acknowledged my arrival. We had a bit of a chat and she said the pain was still low. The pain doctors had reduced the MSContin to 15mg as of the 6AM dose with orders for 15-15-15 on an eight hour cycle compared to the 30-30-45 she had been on at home before things began going bad. Given a 15 mg dose at 6AM and that she has drifted off again is causing the doctors to be concerned about much too much morphine in her system.
Mary has now signed the consent for the celiac plexus block (CPB) which is now set for tomorrow. The expectation is the CPB will interrupt the nerve signals allowing Mary to drop much of the pain medication regimen and thus regain clarity of thought again. The pain doctor who had been neutral to the procedure now believes it is necessary because there is not a satisfactory low-high dose of morphine for Mary's condition.
This first CPB uses anesthetic and provides about 24 hours of relief. If it does, then they go back in an inject drugs that kill the nerves.
Mary has not been able to urinate, probably because her abdomen is so enlarged and her mind is so fuzzy that she cannot get the valves to work. As a result, they put a catheter in her this AM. She has produced more fluid in the first hour than she did all day yesterday so that is good.
The doctors have definitely ruled out infection which I didn't realize was on the agenda for consideration. They have also ruled out mechanical blockage based on the images that have been taken. That leaves inflammation or cancer. They admitted there is still the very remote possibility that its infection or mechanical blockage. (What have we done to our medical profession that they all talk like attorneys now?) The answer may be in the results from the paracentesis done on Monday. The Oncology team said that it can take up to three days but they would start harassing the pathology folks to get an answer today.
The paracentesis results are in multiple parts. The early parts did definitely confirm the fluid was albumin and also ruled out infection. I have asked both Reenie and the doctors where albumin would be coming from. Apparently it can be generated by many organs in the body if those organs are experiencing some form of distress. Given they have ruled out infection and mechanical blockage, the distress could be from 1) inflammation such as physical damage like a fall or accident or 2) cancer cells in the peritoneal cavity. And, the cytology we are waiting for may tell us if cancer cells are present in the fluid which came from the peritoneal cavity. This is a pretty good link to four pages describing the paracentesis procedure. The third page discusses results. We are waiting for the cytology on the sample which is done by centrifuging the fluid to collect the cells and then laboriously looking at the collected cells under a microscope.
Mary did not eat a bit of her breakfast. Lunch just arrived and I am going to see if we can get some food into our girl.
Mary has now signed the consent for the celiac plexus block (CPB) which is now set for tomorrow. The expectation is the CPB will interrupt the nerve signals allowing Mary to drop much of the pain medication regimen and thus regain clarity of thought again. The pain doctor who had been neutral to the procedure now believes it is necessary because there is not a satisfactory low-high dose of morphine for Mary's condition.
This first CPB uses anesthetic and provides about 24 hours of relief. If it does, then they go back in an inject drugs that kill the nerves.
Mary has not been able to urinate, probably because her abdomen is so enlarged and her mind is so fuzzy that she cannot get the valves to work. As a result, they put a catheter in her this AM. She has produced more fluid in the first hour than she did all day yesterday so that is good.
The doctors have definitely ruled out infection which I didn't realize was on the agenda for consideration. They have also ruled out mechanical blockage based on the images that have been taken. That leaves inflammation or cancer. They admitted there is still the very remote possibility that its infection or mechanical blockage. (What have we done to our medical profession that they all talk like attorneys now?) The answer may be in the results from the paracentesis done on Monday. The Oncology team said that it can take up to three days but they would start harassing the pathology folks to get an answer today.
The paracentesis results are in multiple parts. The early parts did definitely confirm the fluid was albumin and also ruled out infection. I have asked both Reenie and the doctors where albumin would be coming from. Apparently it can be generated by many organs in the body if those organs are experiencing some form of distress. Given they have ruled out infection and mechanical blockage, the distress could be from 1) inflammation such as physical damage like a fall or accident or 2) cancer cells in the peritoneal cavity. And, the cytology we are waiting for may tell us if cancer cells are present in the fluid which came from the peritoneal cavity. This is a pretty good link to four pages describing the paracentesis procedure. The third page discusses results. We are waiting for the cytology on the sample which is done by centrifuging the fluid to collect the cells and then laboriously looking at the collected cells under a microscope.
Mary did not eat a bit of her breakfast. Lunch just arrived and I am going to see if we can get some food into our girl.
Tuesday, March 30, 2010
Tuesday news
Mary was alert enough to get on the phone with Lara and a little later with Daniel. She was able to hold a bit of a conversation for about a minute or two and then her mind starts to wander. At that point I took the phone and we had nice chats.
I arrived at 7AM thanks to the early departure of Reenie for Du Loot--I just proceeded on to the hospital. Mary was awake, alert and greeted me with a big hello. I was surprised given Mary's sleepy, non-responsive state yesterday. Reenie called me from Duluth so she is home now.
When the pain doctors came by in preparation for the celiac block procedure, Mary simply said that she didn't know what it was and she would like to wait 24 hours until her brain clears and she can make an informed decision. I must say the doc was surprised because he explained it yesterday--to the narcotic fuzzy-head patient that looks exactly like Mary--when she was totally out of it--Duh! I was pleased that she was aware enough to realize that she was doped up and should not make such a key decision.
The ramble of oncology residents came through today and confirmed that they don't know. The results from the two liters of fluid have not come back for a cancer confirmation.
Tom E (Cretin High School classmate) dropped in this morning and MaryR dropped in this afternoon. MaryR finished work, came for a visit at the hospital, is now heading home and will feed our dogs on the way. Thanks to both of you for stopping in.
I arrived at 7AM thanks to the early departure of Reenie for Du Loot--I just proceeded on to the hospital. Mary was awake, alert and greeted me with a big hello. I was surprised given Mary's sleepy, non-responsive state yesterday. Reenie called me from Duluth so she is home now.
When the pain doctors came by in preparation for the celiac block procedure, Mary simply said that she didn't know what it was and she would like to wait 24 hours until her brain clears and she can make an informed decision. I must say the doc was surprised because he explained it yesterday--to the narcotic fuzzy-head patient that looks exactly like Mary--when she was totally out of it--Duh! I was pleased that she was aware enough to realize that she was doped up and should not make such a key decision.
The ramble of oncology residents came through today and confirmed that they don't know. The results from the two liters of fluid have not come back for a cancer confirmation.
Tom E (Cretin High School classmate) dropped in this morning and MaryR dropped in this afternoon. MaryR finished work, came for a visit at the hospital, is now heading home and will feed our dogs on the way. Thanks to both of you for stopping in.
A quick status
No celiac plexus procedure today--postponed at Mary's request.
Mary is much more alert and engaged than yesterday but there are still substantial periods of narcotic fuzzies.
Reenie flew home this AM on a 6:30AM flight.
The results from the paracentesis have not come back--yet! (3:30PM).
I have not been posting because I've replaced Reenie's role in supplementing the nursing staff. Its a lot of work!
More later
Mary is much more alert and engaged than yesterday but there are still substantial periods of narcotic fuzzies.
Reenie flew home this AM on a 6:30AM flight.
The results from the paracentesis have not come back--yet! (3:30PM).
I have not been posting because I've replaced Reenie's role in supplementing the nursing staff. Its a lot of work!
More later
Monday, March 29, 2010
The pain doctor stopped in...
And he was very concerned about Mary's heavy sleeping all day long. So much so, he has reduced her next several MSContin doses from 60mg to 30mg. Morphine is processed by the liver for removal from the body. Given Mary's liver is not running on all cylinders, it is likely that Mary is building up morphine to an inappropriate level. Thus, the pain doc first woke her up and then changed the pain order to half of the prior dose.
They are planning the celiac plexus nerve block tomorrow, some time between 11AM and 2PM. This is actually a two part procedure, with tomorrow's procedure using anesthetics to prove that numbing the celiac plexus actually does help Mary. If it does reduce pain over the next day or two, then they go back in an apply the drugs that are fatal to the nerves.
Mary continues to be totally out of it 93.5% of the time (a compromise between myself at 90% and Reenie's 97%). With the reduced MSContin, I hope she is more alert and awake tomorrow.
Reenie flies home tomorrow on a 6:30AM flight. I will certainly miss her and I am sure Mary will too. But, she has a husband and a job and she wants to keep at least one of them--I don't remember which. Thank you, Thank you, Thank you Reenie!
They are planning the celiac plexus nerve block tomorrow, some time between 11AM and 2PM. This is actually a two part procedure, with tomorrow's procedure using anesthetics to prove that numbing the celiac plexus actually does help Mary. If it does reduce pain over the next day or two, then they go back in an apply the drugs that are fatal to the nerves.
Mary continues to be totally out of it 93.5% of the time (a compromise between myself at 90% and Reenie's 97%). With the reduced MSContin, I hope she is more alert and awake tomorrow.
Reenie flies home tomorrow on a 6:30AM flight. I will certainly miss her and I am sure Mary will too. But, she has a husband and a job and she wants to keep at least one of them--I don't remember which. Thank you, Thank you, Thank you Reenie!
The draining is done
(Reposted due to font problems, no other changes.)
They drained about 2L (about 2 quarts) of fluid from Mary. That is about 4.5 lbs (2kg) so it isn't much compared to the 17 lb gain since Friday morning. As I wrote previously, some results will be available tonight, some will be tomorrow.
The physical trainer arrived and taught Mary some in-bed exercises. Mary was in her dreamy narcotics state so I am not sure how much 'took' but she did leave a set of diagrams and I'll be working with Mary tomorrow. They have also put leggings on her that massage her calves to minimize risk of clotting.
The reading of the CT Scan by the "A Team" resulted in the same answer. They could not find anything that would represent a blockage or obstruction. of a problem. In other words, the same situation we had originally a year ago when they couldn't confirm the cancer until they found it as a result of the gall bladder surgery.
The pain doctors are recommending a celiac plexus nerve block to alleviate the pain and reduce the amount of painkiller Mary is taking. You can read some write ups here, here and here.
Mary's Oncologist, Dr. Fisher, dropped in for a visit. He again iterated that the evidence is not absolute for a recurrence of cancer so they are continuing to seek other explanations, either inflammation or a mechanical block. Given Mary's response to the narcotics, he is not adverse to the proposed celiac plexus block which would reduce the level of pain, resulting in less narcotics in Mary's system and allowing Mary's brain to function again.
Reenie and I had an argument today. I think Mary was out of it 90% of the time and Reenie thought it was 97%. Either way, Mary has not been as perky and communicative as yesterday. This must be disappointing to her kids for they do want to talk to her.
They drained about 2L (about 2 quarts) of fluid from Mary. That is about 4.5 lbs (2kg) so it isn't much compared to the 17 lb gain since Friday morning. As I wrote previously, some results will be available tonight, some will be tomorrow.
The physical trainer arrived and taught Mary some in-bed exercises. Mary was in her dreamy narcotics state so I am not sure how much 'took' but she did leave a set of diagrams and I'll be working with Mary tomorrow. They have also put leggings on her that massage her calves to minimize risk of clotting.
The reading of the CT Scan by the "A Team" resulted in the same answer. They could not find anything that would represent a blockage or obstruction. of a problem. In other words, the same situation we had originally a year ago when they couldn't confirm the cancer until they found it as a result of the gall bladder surgery.
The pain doctors are recommending a celiac plexus nerve block to alleviate the pain and reduce the amount of painkiller Mary is taking. You can read some write ups here, here and here.
Mary's Oncologist, Dr. Fisher, dropped in for a visit. He again iterated that the evidence is not absolute for a recurrence of cancer so they are continuing to seek other explanations, either inflammation or a mechanical block. Given Mary's response to the narcotics, he is not adverse to the proposed celiac plexus block which would reduce the level of pain, resulting in less narcotics in Mary's system and allowing Mary's brain to function again.
Reenie and I had an argument today. I think Mary was out of it 90% of the time and Reenie thought it was 97%. Either way, Mary has not been as perky and communicative as yesterday. This must be disappointing to her kids for they do want to talk to her.
They are getting ready to pop the balloon
Two doctors are here and they re-ultrasounded her to confirm the pocket of fluids. They have numbed her and are about to pop the balloon.
Given my personal strengths, Reenie is standing bedside while I am firmly seated. Last time (June last year) a bit of abdominal work was done post surgery, they managed to get the chair under me before I hit the ground. This time I am proactively set up to not create a 2nd problem.
The procedure seems to be going well and Reenie just noted that her tummy appears to be relaxing.
Mary is awake and aware of what is going on.
We'll have some results tonight and the rest tomorrow.
Given my personal strengths, Reenie is standing bedside while I am firmly seated. Last time (June last year) a bit of abdominal work was done post surgery, they managed to get the chair under me before I hit the ground. This time I am proactively set up to not create a 2nd problem.
The procedure seems to be going well and Reenie just noted that her tummy appears to be relaxing.
Mary is awake and aware of what is going on.
We'll have some results tonight and the rest tomorrow.
Monday at Noon
Mary has been pretty much out of it today. She does respond at times but immediately falls asleep again. She is definitely starting to bloat in her extremities and she has gained about 17 lbs (7.5kg) since she checked in here three days ago.
The ultrasound was done and there is a big X on Mary's abdomen and now we are waiting for the drain team. Apparently, this procedure can be done in the room. I was able to watch the screen while the tech ran the ultrasound and there is lots of fluid in big collections all over her abdomen. He picked a place below the bikini line--um, yeah, right. I don't think that is important!
All in all, a quiet morning.
The ultrasound was done and there is a big X on Mary's abdomen and now we are waiting for the drain team. Apparently, this procedure can be done in the room. I was able to watch the screen while the tech ran the ultrasound and there is lots of fluid in big collections all over her abdomen. He picked a place below the bikini line--um, yeah, right. I don't think that is important!
All in all, a quiet morning.
Sunday, March 28, 2010
The late report
Reenie and I left about 8PM tonight because we need to be back at Stanford by about 7AM. Julie, who has been the night shift nurse all three nights, says the 8AM is fiction and that is the earliest they may call Mary. More likely, some accident victim will push her back and the work will be done sometime during the morning.
Mary was feeling a whole bunch better on MSContin this afternoon/evening. She was awake, aware and although at time she had her eyes closed, she was listening and reacting to the conversation. The nurses are still giving her fentanyl boosters for breakthrough pain although the doctors want to switch her to liquid morphine sulphate (aka Roxinol). The issue is establishing the baseline need for MSContin so the nursing staff is working to make sure they get a clear understanding of Mary's pain levels by administering the fentanyl boosters over the MSContin baseline. Bless those nurses! And, bless those Pain Unit doctors who figured out that the Oncology pain regimen that Mary has been on since Feb 19 was the best thing for her after 36 hours of jerking her around! Wow, impressive!
Mary continues to be severely bloated. Reenie and I both think it looks like 8 months pregnant right now, up from 6 months yesterday. The morning procedure may, if appropriate, drain some or a bunch of the fluid. Putting Mary back on Dr. Visser's diuretics may also help, although they are slow acting. Why is she bloating? They have an IV dripping saline into her, she is drinking tea and water and she is not urinating to match. Simple physics, the gozinta is bigger than the gozouta, hence, bloated abdomen. Her extremities are not showing the bloating which makes it different than the SIADH in May and the bloating that presented last summer.
Where are we? We had a nice long conversation with the Fellow, Alex Ungewickell, who laid out all the likely scenarios. We were very pleased that he had taken the time to read Mary's entire history back to her first contact with Dr. Banerjee in April of 2009. Dr U was quoting specific issues we have encountered this past year. Great job! It was very impressive. Basically, we don't know what this could be yet. Further testing and perhaps the paracentesis will tell us what is going on. We are still on 1) Inflammation, 2) Mechanical Blockage and 3) Return of cancer.
Reenie and I were feeling much better tonight as Mary was much more comfortable on the MSContin with Fentanyl boosters. We shall see what morning brings.
Saturday's CT Scan is inconclusive for the simple fact that the weekend team is not used to looking at images of a liver trisegmentectomy after the fact. Dr. U was very forthright in saying, "I cannot read the images, I have never seen a post-liver trisegmentectomy." He has called in the "A Team" to figure out what the images are telling them. That will happen tomorrow.
On Tuesday, the pain unit doctors are proposing a procedure that would interrupt the nerve signals. We'll discuss the pro's and con's after the ultrasound/paracentesis event in the morning. The pain unit procedure would basically block any pain signals from the area that is now causing Mary undue pain and discomfort.
On Tuesday, the pain unit doctors are proposing a procedure that would interrupt the nerve signals. We'll discuss the pro's and con's after the ultrasound/paracentesis event in the morning. The pain unit procedure would basically block any pain signals from the area that is now causing Mary undue pain and discomfort.
Reenie and I were feeling much better tonight as Mary was much more comfortable on the MSContin with Fentanyl boosters. We shall see what morning brings.
Plans for Monday Morning
Mary is scheduled for an abdominal ultrasound at 8AM. When I wrote earlier about the ultrasound, I was not aware that it was accompanied with an option for a procedure. If they find the right conditions, they will do a paracentesis. A paracentesis procedure boils down to "the needle in the tummy" to remove excess fluids and then the fluids are analyzed to see if they can determine the source of the fluid. The condition is called ascites and here is a page in WebMD describing the whole enchilada.
As for the video I posted, it is from Mary's window and the helicopter pad is on the top of the building across from her room. I have tried, but the choppers approach from the other angle so I never get a shot of them in the air.
A quiet afternoon simply waiting. Mary's pain have changed, again. We are now back on MSContin with fentanyl boosters and the liquid morphine sulfate has been ordered but not dispensed yet.
As for the video I posted, it is from Mary's window and the helicopter pad is on the top of the building across from her room. I have tried, but the choppers approach from the other angle so I never get a shot of them in the air.
A quiet afternoon simply waiting. Mary's pain have changed, again. We are now back on MSContin with fentanyl boosters and the liquid morphine sulfate has been ordered but not dispensed yet.
A bright and sunny Sunday
I arrived just before 8AM and missed an oncology internist. The nurse told me that was probably the "scout" assessing patients before the main ramble shows up. Who knew they needed a scout to find the patients and probably draw a map so the ramble can find them too? When the pain resident showed up, I was here and we had a good discussion about Mary's pain killer history.
The objective for the pain doctors is to find a regimen that Mary can use at home. That is why they took her off the IV so soon. And, as a result of the conversation and the fact that Mary was in pain all night with yesterday's fentanyl patch + Roxycodone, they are now willing to listen to us. I explained again Mary's successful history switching from the fentanyl patch to MSContin plus liquid morphine sulfate (Roxinol) in Feb and how that worked well.
So as I finished the above paragraph, the pain ramblers arrived. Guess what? They have discovered that MSContin plus liquid morphine sulfate (Roxinol) is the best solution for her! And I am very sure they think it was their idea.
In the middle of all of this, they brought Mary a breakfast consisting of cornflakes with non-fat milk, banana, OJ and coffee and tea. Mary ate a few small bites of the cornflakes--something she never eats so I am not surprised--and a small bit of the banana. Given that she had not had any solid food since Thursday, that is probably a good thing.
The Oncology ramblers arrived and I was able to ask them a couple of key questions. First question addressed the diuretics. Mary had been on diuretics ordered by the surgeon from post surgery until she went off of them in late Feb. Is this fluid retention something that going back on the diuretics would possibly alleviate? I showed them the list of medications she had been taking and got a nod of approval for the diuretics. I just checked with the nurse and they are ordering her back on the diuretic originally prescribed by Dr. Visser. Imagine that!
The second question addressed the results of the CT Scan. The answer is that the final answer isn't going to be forthcoming until the A team looks at the images tomorrow. The weekend team doesn't see any obvious blockage. Then again, I don't know how many liver trisegmentectomy images they look at so we'll just wait for the A team interpretations on Monday. In addition, we got clarification on the nature of the obstruction: the obstruction is inferred from the blood test data and there is no other confirmation yet. OK, gang, I understand that. Now can we concentrate on Mary's distended belly. She looks like she is about 7 months pregnant and her belly button is just about inverted.
They are ordering an ultrasound of the distended belly in an attempt to establish how the fluid is being retained. There is a small pocket of fluid on the CT scan but that would not explain Mary's distended belly.
The pain folks have also put her on the schedule for some form of a spinal nerve block procedure. They will come back to discuss the procedure later today and the risks. Decision to proceed will be after that.
This morning, I talked with Daniel so we have had in depth conversations with Mary's three offspring.
More later...
The objective for the pain doctors is to find a regimen that Mary can use at home. That is why they took her off the IV so soon. And, as a result of the conversation and the fact that Mary was in pain all night with yesterday's fentanyl patch + Roxycodone, they are now willing to listen to us. I explained again Mary's successful history switching from the fentanyl patch to MSContin plus liquid morphine sulfate (Roxinol) in Feb and how that worked well.
So as I finished the above paragraph, the pain ramblers arrived. Guess what? They have discovered that MSContin plus liquid morphine sulfate (Roxinol) is the best solution for her! And I am very sure they think it was their idea.
In the middle of all of this, they brought Mary a breakfast consisting of cornflakes with non-fat milk, banana, OJ and coffee and tea. Mary ate a few small bites of the cornflakes--something she never eats so I am not surprised--and a small bit of the banana. Given that she had not had any solid food since Thursday, that is probably a good thing.
The Oncology ramblers arrived and I was able to ask them a couple of key questions. First question addressed the diuretics. Mary had been on diuretics ordered by the surgeon from post surgery until she went off of them in late Feb. Is this fluid retention something that going back on the diuretics would possibly alleviate? I showed them the list of medications she had been taking and got a nod of approval for the diuretics. I just checked with the nurse and they are ordering her back on the diuretic originally prescribed by Dr. Visser. Imagine that!
The second question addressed the results of the CT Scan. The answer is that the final answer isn't going to be forthcoming until the A team looks at the images tomorrow. The weekend team doesn't see any obvious blockage. Then again, I don't know how many liver trisegmentectomy images they look at so we'll just wait for the A team interpretations on Monday. In addition, we got clarification on the nature of the obstruction: the obstruction is inferred from the blood test data and there is no other confirmation yet. OK, gang, I understand that. Now can we concentrate on Mary's distended belly. She looks like she is about 7 months pregnant and her belly button is just about inverted.
They are ordering an ultrasound of the distended belly in an attempt to establish how the fluid is being retained. There is a small pocket of fluid on the CT scan but that would not explain Mary's distended belly.
The pain folks have also put her on the schedule for some form of a spinal nerve block procedure. They will come back to discuss the procedure later today and the risks. Decision to proceed will be after that.
This morning, I talked with Daniel so we have had in depth conversations with Mary's three offspring.
More later...
Saturday, March 27, 2010
Saturday at nite-nite time
What was accomplished today?
We have the Oncology people focused on Mary's improperly functioning liver and bloated abdomen. We have the pain specialists working on making Mary pain free and fully awake. It feels like there might be just one or two too many chefs in the kitchen but perhaps this will get us to a resolution sooner.
For the Oncology folks, they have drawn a pile of blood, taken x-rays of Mary's midsection, run a CT scan of Mary's abdomen and juiced her with two units of red blood platelets. We don't have the final results back yet and what we have heard is inconclusive, partly because the analysis is not complete by the specialists, partly because junior ramblers are delivering the info and they are probably not authorized to tell us too much.
The pain folks have taken Mary off the fentanyl dispensing unit that included a push button so Mary could hit it as needed and put her on a 25 microgram fentanyl patch. This was done before the pain folks talked to me because I could tell them what would happen. Mary did this in January and goes immediately into a nausea-vomiting routine even if she had nothing to eat i.e., dry heaves. A few hours later, they adjusted it to a 12 microgram patch and again, I could tell them her need for Roxinol (Morphine Sulfate) would shoot way up. Guess what?
What is different is that she is on ipuprofen (which cancels taking Celebrex), Lyrica and now Cymbalta. These non-narcotics provide pain relief and we were not doing that in Jan-Feb.
Mary's belly is distended and remember, her liver is now located front and center. After the liver resection last May, they left a triangular chuck of liver just above the belly button. When the liver regenerates, it grows the triangle to be a bigger triangle, it does not reshape itself back to a natural configuration. Mary's abdomen is definitely enlarged and appears to have increased just in the past day or two. It is possible that Mary's heavily customized plumbing job--no bile ducts, a Roux-en-Y procedure, regenerated liver and rerouted intestine into the space where a normal liver would be has caused a mechanical blockage and that is the source of the problem.
Mary was visited by a Ramble of Residents today and we educated them as to Reenie and Mary's term for the herd of white smocked medical folks that swam the patient's bed like bees on honey. I think the staff doctor leading the ramble enjoyed the definition.
By the end of the evening, Mary appeared to be comfortable but was not able to carry on conversations. I talked to Tim and Lara and after we hung up, Mary did agree with what I had said so apparently she was engaged.
Hopefully, the pain docs will have her comfortable, awake and engaged tomorrow. We shall see!
Saturday at 6PM
Mary did get her CT Scan done. And, the preliminary report is that no obvious blockage is observed in her liver. The final reading by the specialist(s) will be done by tomorrow. What does that mean? We don't know, it was a fairly junior rambler who delivered that message and he was not giving us any clue as to what it meant.
The pain docs are in the loop and they seem to change her drugs every couple of hours. They are trying to give her comfort and to keep her awake at the same time. So far, they either put her to sleep or if she is awake, she is in pain. Hopefully they will home in on a solution that balances out the pain vs alertness/drowsiness.
Mary has been on an IV for fentanyl, fentanyl patch at 12 and 25micrograms/hr plus she is on Celebrex and now Cymbalta. She is also approved for Roxycodone at various (increasing) doses as needed.
The priority is to get Mary comfortable and then really dive in on the liver. From what I can tell, the oncology docs are moving faster than the pain docs so we'll probably hear about the liver long before they find an optimum point for the pain.
The pain docs are in the loop and they seem to change her drugs every couple of hours. They are trying to give her comfort and to keep her awake at the same time. So far, they either put her to sleep or if she is awake, she is in pain. Hopefully they will home in on a solution that balances out the pain vs alertness/drowsiness.
Mary has been on an IV for fentanyl, fentanyl patch at 12 and 25micrograms/hr plus she is on Celebrex and now Cymbalta. She is also approved for Roxycodone at various (increasing) doses as needed.
The priority is to get Mary comfortable and then really dive in on the liver. From what I can tell, the oncology docs are moving faster than the pain docs so we'll probably hear about the liver long before they find an optimum point for the pain.
Hospital Time
We are still waiting for Mary to go for her CT scan. They have given
her an extra IV of saline to work on her dehydration. The nurse just
told us they have ordered two units of whole blood because of low
hemaglobin and hemacrit.
her an extra IV of saline to work on her dehydration. The nurse just
told us they have ordered two units of whole blood because of low
hemaglobin and hemacrit.
Mary has slept all morning and the nurse said the bllod transfusion
should pretty much wake her up.
Saturday Morning
Mary rested well and she reported a pain level of 4. I did catch Dr
Zhou and they have ordered a CT scan of her abdomen. The other
objective today is to determine the amount of painkiller she needs and
can tolerate.
Zhou and they have ordered a CT scan of her abdomen. The other
objective today is to determine the amount of painkiller she needs and
can tolerate.
Our cell phones are working in Mary's room. We have Mary's cell now
and Reenie is bringing mine in a bit--I managed to leave the house
without mine--duh!
So what is going on?
Mary was admitted to Stanford Hospital today. This is the summary backgrounder and you can read prior posts to get a sense of how the day progressed.
Mary has been on MSContin (Morphine Sulfate) starting Feb 19 and we were hoping to get her off of the narcotic and onto a different pain killer. As a result the pain clinic docs recommended a ramp up of Neurontin.
Mary started building up her Neurontin (gabapentin) at a rate of one additional 300mg pill every other day. When we stepped up from 4 pills a day to 5 pills a day, Mary went somnolent (quasi-comatose) and that happened last Saturday (read the blog entry here). The on call pain doctor from Stanford said, "Head to the closest ER now!" so we had the 911 EMT/Paramedic team take her to Good Samaritan.
Good Samaritan ER did a blood test and ran a CT Scan. And the conclusion was the CT Scan was clean and the blood test showed her electrolytes were off and she was slightly anemic. So they sent us home with a conclusion of 'drug interaction'. In hindsight, if we had driven her to Stanford's ER on Saturday, we may have picked up a few days on this problem. Or, it was so early they would have not read the signs as well.
Sunday was not great but not bad. Monday, Mary was back approaching comatose again but Reenie and I said, "Well, this is like Saturday, further drug interaction." The ER doc told us to reduce the gabapentin from 5 to 4 pills a day and, in fact, I did that. It appears reducing to 4 was not enough. On Tuesday, Mary struggled to get ready for the visit to the Stanford's Pain Clinic in Redwood City. And, she made it. The result of that visit are written here on the blog.
Starting on Tuesday night, Mary stopped taking gabapentin and switched to Lyrica (pregabalin) and that builds up by adding one pill every seven days so a much slower ramp.
Wednesday was also not great and I was frustrated, as was Reenie, with the Pain Center's doctors sort of laid back solution approach coupled with a "We only recommend, your primary has to set the direction." So I called the head of the Cancer Center's Patient Services and she mainlined us to Margareet who has been on Mary's paperwork for ages but not visible in her roll. Margareet is, it appears, the senior PA, RN, chief of staff, walking medical encyclopedia, mother hen and den mother for our oncologist's patients and staff. After I described the scenario to her, she recommended observation for one day and then a call back. We called her back on Thurs afternoon, reporting our findings and she recommended we call back early on Friday and request a "sick call" in the Cancer Center.
Margareet set us up for 11:30AM and we arrived on time. After a lot of buzzing and testing and waiting for test results, Margareet told us that the liver functions were abnormal and therefore Mary was being admitted. During this three hour wait, I ran into Mary's Oncologist in the coffee shop and he seemed a bit surprised to see me but later I saw him and Margareet in the hallway discussing something to be immediately followed by Margareet walking up to me to tell me that Mary was being admitted.
Mary was admitted at 6PM and she is now a patient at Stanford Hospitals. Reenie and I met a Resident and the Fellow and the Fellow stated that the issue is an apparent blockage of the biliary system. This blockage is preventing Mary's liver from processing the medications and flushing them into the intestines. Thus, when we stepped up the gabapentin and she went comatose, it was the liver's inability to flush the medications that caused the problem.
What could cause the blockage? Well, that is why they admitted her to figure it out. She has already had x-rays, more blood draws and is set for CT Scans and whatever in the morning.
More later.
Friday, March 26, 2010
Admitted
Mary is in the hospital again. She has a nice garden window and,
unfortunately, a roommate.
unfortunately, a roommate.
The nurse has been here and is now seeking the orders for meds.
She is self-reporting high pain levels so we were told she would be on
morphine.
Phone service is iffy.
Stanford Phone Coverage
We are in a part of Stanford's complex where there is no cell
coverage. WiFi does work so I can email and web browse.
coverage. WiFi does work so I can email and web browse.
Mary is resting comfortably because of a dose of morphine-again. We
were told she is being admitted but we haven't heard the plan, timing
or any of that.
Mary is being admitted
Blood tests are back and Mary is being admitted. Her body chemistry is
off kilter and they want to figure it out.
off kilter and they want to figure it out.
Later
Hospital time again
Blood has been taken, IV is hydrating and morphine added to the IV has
provided some relief.
provided some relief.
We are waiting for the blood test results. I went to the snack shop to
get lunch and ran into Mary's Oncologist. We had a brief discussion
about Mary's pain recurring again. He did say they would get to the
bottom of it.
Later
Unplanned visit to Stanford
Reenie, Mary and I are in Stanford's Cancer center. More blood draws,
more pain meds and a very concerned staff.
more pain meds and a very concerned staff.
News later.
Thursday, March 25, 2010
Yes, I changed the look of the blog. And, a report on my cataract surgery
There are two entries about Mary below this posting for the latest on her situation.
Before we went to Stanford on Tuesday afternoon, I had my 3rd follow up exam with my ophthalmologist. The bottom line is that my right eye, the eye that has been at 20-400 (without corrective lenses) for fifty years is now 20-25 or so. And, the astigmatism which was rather pronounced is virtually gone. My doctor explained that he is one of the few doctors in this area who will take the time to figure out precisely where and what kind of incision to make in the eye plus using a special, difficult suture that allows him to adjust astigmatism as part of the surgical recovery process. Amazing.
Again, for those who are interested, the information about the astigmatism being fixed is here. The conversion of US eye measurements to other international measurements is here.
Before we went to Stanford on Tuesday afternoon, I had my 3rd follow up exam with my ophthalmologist. The bottom line is that my right eye, the eye that has been at 20-400 (without corrective lenses) for fifty years is now 20-25 or so. And, the astigmatism which was rather pronounced is virtually gone. My doctor explained that he is one of the few doctors in this area who will take the time to figure out precisely where and what kind of incision to make in the eye plus using a special, difficult suture that allows him to adjust astigmatism as part of the surgical recovery process. Amazing.
Again, for those who are interested, the information about the astigmatism being fixed is here. The conversion of US eye measurements to other international measurements is here.
A sense of progress
Let me first report that Mary did become more alert and awake Wednesday afternoon and evening. She ate a nice salad with steak dinner and stayed awake watching a netflix DVD so that is considerable progress.
I did reach the Ombudsman type person at the Cancer Center and that triggered a call from the oncology PA, Margareet. I explained what has transpired in the past several days and she was very concerned. Basically, we have a plan for Mary to be seen at the Cancer Center either Thursday or Friday depending on her progress today and tomorrow.
It appears that the unspoken assumption underlying the Oncologist blessing and sending Mary on her way at the end of Feb was that she would continue to get better. As that is not happening, we are now invited to contact the Oncologist's team to work the problem and instructed that is the default for Mary's care as a 'former' cancer patient. So now we have a plan to move forward working through the Oncology staff.
Margareet also explained that there is a way for our primary care physician to be more plugged in. I will work that issue as well.
Finally, Margareet is an RN, PA, et al and she said that pregabalin would likely put Mary in a sleepy state for the first 12 to 36 hours. Given that Mary became alert and stayed awake from mid-afternoon to late this evening, it appears Magareet is correct and we'll know more tomorrow.
I did reach the Ombudsman type person at the Cancer Center and that triggered a call from the oncology PA, Margareet. I explained what has transpired in the past several days and she was very concerned. Basically, we have a plan for Mary to be seen at the Cancer Center either Thursday or Friday depending on her progress today and tomorrow.
It appears that the unspoken assumption underlying the Oncologist blessing and sending Mary on her way at the end of Feb was that she would continue to get better. As that is not happening, we are now invited to contact the Oncologist's team to work the problem and instructed that is the default for Mary's care as a 'former' cancer patient. So now we have a plan to move forward working through the Oncology staff.
Margareet also explained that there is a way for our primary care physician to be more plugged in. I will work that issue as well.
Finally, Margareet is an RN, PA, et al and she said that pregabalin would likely put Mary in a sleepy state for the first 12 to 36 hours. Given that Mary became alert and stayed awake from mid-afternoon to late this evening, it appears Magareet is correct and we'll know more tomorrow.
Wednesday, March 24, 2010
Not a great couple of days
Mary is out of it most of the time although she does have periods of lucid behavior. And, we have been able to keep food in her for the past 24 hours or so. She had a tough time waking up and by the time I left for work at 11AM, she had eaten a few bites of oatmeal. She is not able to walk when she is conscious but really, really out of it--her legs buckle underneath her--so I support her when she needs to move. Reenie is afraid she is not strong enough so I suggested they use the secretarial chair (wheels) to move Mary around.
We did see the pain doctors yesterday and they were surprised by her reaction to neurontin as well as her possible difficulty with ongoing MSContin. Frankly, we were a bit disappointed with the position taken by the pain doctors regarding who is in charge, so I called the Manager of the Cancer Supportive Care program today and asked how we can change that situation. I am expecting a call back from her yet today--we want Mary to have a primary care doc who is in the Stanford system and can integrate all the diagnosis, tests, treatments et al in a timely manner.
While in the examination room at the Pain Center yesterday, Mary tossed her lunch (albeit an itty bitty lunch) in front of doctor #1, a rambler. He then left to meet with the staff doctor. When they returned, the saw that Reenie and I had lowered the exam table to be nearly flat and Mary was laying down on her left side which seems to be her most comfortable position. The rest of the exam was conducted while Mary was horizontal--and very drowsy although not near-comatose that drove us to the ER on Saturday and she approached at times on Monday.
They have ordered another procedure and it is being scheduled. Frankly, the speed at which the pain doctors move is slow even though they saw what we are dealing with first hand. I will be calling this afternoon to get that scheduled procedure happening a lot sooner than later. The procedure is injection of steroids near the area of the spine where the pain is sourced. I don't remember the technical term nor a lot of the details.
We did switch Mary's meds again. The neurontin (gabapentin) is gone and she is now taking Lyrica (pregabalin) and will be ramping up slowly over the next 8 weeks or so. The MSContin remains unchanged. We will need to monitor for breakthrough pain and then seek adjustment as necessary. And she is back on Zofran for nausea again.
That is all for now.
We did see the pain doctors yesterday and they were surprised by her reaction to neurontin as well as her possible difficulty with ongoing MSContin. Frankly, we were a bit disappointed with the position taken by the pain doctors regarding who is in charge, so I called the Manager of the Cancer Supportive Care program today and asked how we can change that situation. I am expecting a call back from her yet today--we want Mary to have a primary care doc who is in the Stanford system and can integrate all the diagnosis, tests, treatments et al in a timely manner.
While in the examination room at the Pain Center yesterday, Mary tossed her lunch (albeit an itty bitty lunch) in front of doctor #1, a rambler. He then left to meet with the staff doctor. When they returned, the saw that Reenie and I had lowered the exam table to be nearly flat and Mary was laying down on her left side which seems to be her most comfortable position. The rest of the exam was conducted while Mary was horizontal--and very drowsy although not near-comatose that drove us to the ER on Saturday and she approached at times on Monday.
They have ordered another procedure and it is being scheduled. Frankly, the speed at which the pain doctors move is slow even though they saw what we are dealing with first hand. I will be calling this afternoon to get that scheduled procedure happening a lot sooner than later. The procedure is injection of steroids near the area of the spine where the pain is sourced. I don't remember the technical term nor a lot of the details.
We did switch Mary's meds again. The neurontin (gabapentin) is gone and she is now taking Lyrica (pregabalin) and will be ramping up slowly over the next 8 weeks or so. The MSContin remains unchanged. We will need to monitor for breakthrough pain and then seek adjustment as necessary. And she is back on Zofran for nausea again.
That is all for now.
Monday, March 22, 2010
And today is the one year anniversary
We were in Denver visiting my grandkids, daughter-in-law and son when Mary presented flu-like symptoms in the very early hours of Sunday morning, March 22nd one year ago. We subsequently learned that flu was actually cholangiocarcinoma (bile duct cancer).
Her surgeon gave her good odds because she was Young, Active, Healthy and Thin. We chartered our jeweler, Ken Gehrkens of Los Gatos, to make a neck piece that spells out YAHT to be ready for the anniversary on the 22nd. Ken delivered, thank you! Mary wears it full time and we need to return it to Ken for a couple of final tweaks and polish. When that is done, I'll post a picture of this wonderful piece.
For the cancer that Mary had, one year is a miracle. As I have written before, out of the 3,000 cases in the USA each year, only 100 or so make it to a one year anniversary. Congratulations are in order! And a sincere thanks to all the medical staff at both Good Samaritan in San Jose and Stanford Hospitals who made it possible for Mary to celebrate the 1 year milestone.
Now if we can only get past the back pain and drug induced side effects, our girl would be on a roll!
Her surgeon gave her good odds because she was Young, Active, Healthy and Thin. We chartered our jeweler, Ken Gehrkens of Los Gatos, to make a neck piece that spells out YAHT to be ready for the anniversary on the 22nd. Ken delivered, thank you! Mary wears it full time and we need to return it to Ken for a couple of final tweaks and polish. When that is done, I'll post a picture of this wonderful piece.
For the cancer that Mary had, one year is a miracle. As I have written before, out of the 3,000 cases in the USA each year, only 100 or so make it to a one year anniversary. Congratulations are in order! And a sincere thanks to all the medical staff at both Good Samaritan in San Jose and Stanford Hospitals who made it possible for Mary to celebrate the 1 year milestone.
Now if we can only get past the back pain and drug induced side effects, our girl would be on a roll!
Here we go again...
Mary is not doing well. The narcotic pain killer coupled with the non-narcotic has our girl tied up in knots. We had a overdose on Saturday that took us to the ER. Well, she was in a near similar state this AM when I woke up--but not as bad. Reenie reported she came out of it late morning. And, she was back into it after dinner tonight.
We are scheduled at the pain clinic tomorrow at 4PM. I am extremely hopeful we can get full attention on Mary's predicament and start movement to solve both the back pain and the reaction to the drugs.
Have I raved enough on how great it is for Reenie to be here? Reenie is a saint, I am sure. She has provided moral support, medical know how and general "let's make this work" attitude that is so deeply appreciated. Thank you, Reenie. Oh, yeah, the food is great too!
More tomorrow after the pain clinic.
A Sunday Update
A phone picture of Mary in the ER on Saturday. She is wearing my new $10 cheaters because she wanted to read something on a phone. Sunday was a good day for her. She was awake and alert most of the day and napped later in the afternoon--same time I napped as a matter of fact.
Reenie is cooking and baking and generally having a great time. As we walked from the car to Farmers' Market this morning, she was almost giddy and said, "Going to Farmers' Market in March is better than Disneyland!" Who says there isn't something called cabin fever that affects those who live in cold, dark northern climates?
As for my cataract surgery, things are progressing well. I am having trouble getting used to the feeling of no glasses on my face--although that may change as we get all the healing done. And, I have lost my ability to bring things close to my right eye without glasses on to see small things. That eye is now 20-25 or so and cannot focus to short distances--not a surprise.
I only need to use the eye patch while sleeping and tonight is the last time I get to play pirate as I go to bed. I am glad that is over because the tape they supplied is ripping the skin off of my face.
Mary will see the pain doctor on Tuesday afternoon. We are all hoping for some direction to the source of pain she is suffering.
Saturday, March 20, 2010
I forgot to describe Friday
Mary was quiet and kinda out of it Friday morning and then all of a sudden, her head cleared and she and Reenie went shopping, were bantering back and forth like they always have done, had real full conversations and set plans for the menus for meals for the coming days. Reenie was ecstatic to find the real Mary under the drug induced haze.
That changed like a light switch about the time I got home Friday night. Mary just went quiet and in fact had a hard time with dinner for the first time in a long time. Reenie was disappointed but also very happy to learn that Mary's brain box was still fully functional but for the drugs. Well, the next entry describes our unusual Saturday.
That changed like a light switch about the time I got home Friday night. Mary just went quiet and in fact had a hard time with dinner for the first time in a long time. Reenie was disappointed but also very happy to learn that Mary's brain box was still fully functional but for the drugs. Well, the next entry describes our unusual Saturday.
Not a regular Saturday
Mary joined us for breakfast and ate a reasonable portion of Reenie's blueberry pancakes and strawberries. She then returned to the chaise lounge and shortly thereafter, moved to bed. We could not wake her up but thought she needed the rest. At 2PM, we gave her the daily dose of gabapentin and mscontin and it was clear was she was not fully conscious. We continued to watch and observe and she continued to not be responsive. Her blood pressure was good, pulse was consistent and respiration rate was good.
We called Stanford and when we described the situation to the on call doctor, his instructions were to get her to the closest ER as quickly as possible. Better yet, call 911 so the help comes to us. Given Good Sam is seven minutes from the house, I thought we'd just take her. However, given the difficulty of getting her from the bedroom to the garage door in the TV room, I told Reenie we were calling 911. Basically, she could not stand as in I was lifting her full body weight. We put her in a wheeled desk chair and rolled her to the TV room.
The EMT and Paramedics were superb, firing questions and carefully listening to the answers. It was a surprise to Reenie and me that Mary was answering some of the questions herself when five minutes earlier she would not respond to us in any way! They took her away, we chatted briefly with the neighbors who had noticed a huge white Emergency Response truck and a large ambulance both with flashing lights in front of the house--kinda hard to miss.
At the ER, they didn't put her on an IV but they did have a needle stuck in her arm just in case. They drew blood and ran a brain CT scan. It was clear she was becoming more and more alert and awake during the entire episode. She was bantering with us and also making a joke or two as we waited for test results. By 9PM the test results had returned and the diagnosis was as Reenie and I suspected--drug interaction between gabapentin and mscontin.
The theory is straightforward. We are ramping up the gabapentin (aka neurontin) per a schedule. Every other day we add a pill and we will stop adding pills when she hits the recommended dose. As of today, she went from four to five pills taking 2 in the morning, 1 after lunch and 2 in the evening. We have been following the plan to not change the mscontin (aka morphine). Apparently, we hit a crossover point between the two painkillers today--not unexpected. We'll proceed with the plan but slowly reduce the mscontin while continuing to increase the gabapentin--in fact, we had already done that with the 2pm dose today reducing the mscontin by about one third and about two hours later she woke up. The objective is to get her off the narcotic while not blasting her with breakthrough back pain.
Mary told us while in the ER that she didn't remember anything from breakfast to the moment she woke up in the TV room with the paramedics hustling around her. After that and through my writing of this blog entry, she has been fully awake, good memory and good appetite--given the late hour Reenie fixed simple scrambled eggs and toast. Mary ate all of her portion.
Thanks to all who expressed concern and offers of help, especially the neighbors.
We called Stanford and when we described the situation to the on call doctor, his instructions were to get her to the closest ER as quickly as possible. Better yet, call 911 so the help comes to us. Given Good Sam is seven minutes from the house, I thought we'd just take her. However, given the difficulty of getting her from the bedroom to the garage door in the TV room, I told Reenie we were calling 911. Basically, she could not stand as in I was lifting her full body weight. We put her in a wheeled desk chair and rolled her to the TV room.
The EMT and Paramedics were superb, firing questions and carefully listening to the answers. It was a surprise to Reenie and me that Mary was answering some of the questions herself when five minutes earlier she would not respond to us in any way! They took her away, we chatted briefly with the neighbors who had noticed a huge white Emergency Response truck and a large ambulance both with flashing lights in front of the house--kinda hard to miss.
At the ER, they didn't put her on an IV but they did have a needle stuck in her arm just in case. They drew blood and ran a brain CT scan. It was clear she was becoming more and more alert and awake during the entire episode. She was bantering with us and also making a joke or two as we waited for test results. By 9PM the test results had returned and the diagnosis was as Reenie and I suspected--drug interaction between gabapentin and mscontin.
The theory is straightforward. We are ramping up the gabapentin (aka neurontin) per a schedule. Every other day we add a pill and we will stop adding pills when she hits the recommended dose. As of today, she went from four to five pills taking 2 in the morning, 1 after lunch and 2 in the evening. We have been following the plan to not change the mscontin (aka morphine). Apparently, we hit a crossover point between the two painkillers today--not unexpected. We'll proceed with the plan but slowly reduce the mscontin while continuing to increase the gabapentin--in fact, we had already done that with the 2pm dose today reducing the mscontin by about one third and about two hours later she woke up. The objective is to get her off the narcotic while not blasting her with breakthrough back pain.
Mary told us while in the ER that she didn't remember anything from breakfast to the moment she woke up in the TV room with the paramedics hustling around her. After that and through my writing of this blog entry, she has been fully awake, good memory and good appetite--given the late hour Reenie fixed simple scrambled eggs and toast. Mary ate all of her portion.
Thanks to all who expressed concern and offers of help, especially the neighbors.
Friday, March 19, 2010
This medical stuff is wild
Saw the doctor again today and he took more measurements of my right eye and also "adjusted" the tension on one of the sutures. I read in an article (click here) published by the American Academy of Opthalmology that sutures can be used to adjust pre-existing astigmatism in the eye. Well, today, he measured my astigmatism and then, after putting a pain blocker in my eye, used an instrument to adjust the suture. It appeared to be a 'needle in the eye' but I could not feel a thing. He then remeasured my astigmatism and it had definitely improved. Wow!
The bottom line is that my right eye is now at 20-30 or perhaps 20-25 and he said it will improve from here. Amazing. My left eye, formerly known as my good eye, measures out at 20-80. For those who are reading this outside of the USA, here is a link to a Wikipedia article explaining how to convert these numbers.
Amazing, simply amazing.
On a totally different topic, this blog is automatically sent to some of my readers (limit of 10) when I push the "post" button. And, some of them complained about yesterday's picture not being visible in the email. This morning I included instructions for that group of 10 to go to the blog to see images if the email failed.
The bottom line is that my right eye is now at 20-30 or perhaps 20-25 and he said it will improve from here. Amazing. My left eye, formerly known as my good eye, measures out at 20-80. For those who are reading this outside of the USA, here is a link to a Wikipedia article explaining how to convert these numbers.
Amazing, simply amazing.
On a totally different topic, this blog is automatically sent to some of my readers (limit of 10) when I push the "post" button. And, some of them complained about yesterday's picture not being visible in the email. This morning I included instructions for that group of 10 to go to the blog to see images if the email failed.
Quick Status
My eye is doing great and I see the doc in a few minutes for today's checkup. I take drops 4 times a day for a few weeks and that's it. Not bad.
Mary is suffering from drug induced inertia and stupor. I am glad we are seeing the pain doctor next Tuesday. Reenie's observation is that this has to change, big time. As Reenie said yesterday, she has the benefit of comparing the November visit with this visit and clearly Mary is not doing as well overall. In spite of taking both morphine and neurontin (Gabapentin), Mary is still feeling pain now and then.
Reenie is whipping up a storm of wonderful cooking in the kitchen...thank you Reenie! And, thank you Tom for letting us borrow her for two weeks.
Tom reported that some cannot see the picture from a recent posting. It is not that important but if you want to see it, head to the blog in your browser via the blog link at
http://www.lamey-hughes.com.
Tom reported that some cannot see the picture from a recent posting. It is not that important but if you want to see it, head to the blog in your browser via the blog link at
http://www.lamey-hughes.com.
Lastly, Shawna had her checkup last Saturday. The vet called with the results of the various tests and with a new name for Shawna--Methuselah Dawg!
Wednesday, March 17, 2010
How bored can you get when you are not allowed to read?
This Bored! Taking pictures of my eye patch for something to do!
I'm home
Doctor says it went great. I am not supposed to read until tomorrow, but watching TV is ok. Mary and Reenie are yelling at me that being on the computer is reading so I'll quit now. More tomorrow.
Tuesday, March 16, 2010
Reenie arrived
About 45 minutes early, thank you Delta, the airline formerly known as Northwest. The flight was uneventful and her stopover in Minneapolis went without a hitch.
Reenie fixed a wonderful stir fry in a flash and we enjoyed the results. Thank you, Reenie.
We'll be heading for the hospital for a 6:30 arrival for my phacoemulsification. So it is early to bed tonight!
Mary is following her American Idol program now while I am writing this blog and Reenie is off setting up the guest bedroom. Mary's condition is still pretty darn good. She is still fuzzy from time to time, but overall is doing pretty good considering she is ingesting 150mg of morphine a day plus 800 mg of neurontin (gabapentin).
Supposedly I will be able to post tomorrow but I am not going to push it.
Monday, March 15, 2010
Creeping up on it
We had a very good day today--in spite of that lost hour. I dressed and buzzed to Farmers' Market to get a nice cut of fish--Halibut today. As planned, after I got home we ate a small breakfast and then went to the Market for more veggies, fruits and things. Mary walked the market and actively picked out items in preparation for Reenie's arrival on Tuesday evening. I should note that Mary stops to talk to her favorite vendors, even if she is not buying anything. And, the fishmonger was just about sold out by the time of our 2nd trip. It is definitely worth going early to get the best of the fish!
Ingrid and Maurice dropped in this afternoon--with fresh baked Apple Strudel! It was soooo gooood! I made cappucino's for Ingrid, Mary and me while Maurice had a simple expresso. I am getting good with that Nespresso machine and the wonderful frother! Maurice heads back to DC tonight on a red-eye to finish his last 58 days of law school! Congrats to Maurice!
Mary and I then headed to Lunardi's to do the rest of the grocery shopping. She walked the whole store, ordered a bunch of stuff from the butcher and generally was doing good. A bit slower than she used to be but still moving along and able to stay focussed.
I can not tell you how we are looking forward to getting her off the narcotics and letting her mind become "unfuzzy". The morphine heavily fogs her mental processes a great part of the time so you never know if she is clear or working in a fog. I find it very distressing given how much horsepower is in that brain box of hers. I know it is the morphine and once the morphine is gone, she will be back.
We prepped dinner together tonight and it was nice to have Mary up and about in the kitchen. She helped prep the potatoes, the asparagus and coached on cooking the halibut. Then helped me set up our place setting and plate the food when it was ready. She said she felt no pain today. That is good.
Did I mention fuzzy? I was prepping potatoes and I asked her to turn on our table top oven to pre-heat it. I turned around to find her looking for the pre-heat button on the microwave. Later, when she was trying to heat the asparagus (locally grown, organic for your non-Californians), she couldn't figure out the button sequence on the microwave (the "one-minute" button, three times). From time to time she gets a rather aggressive twitching in her legs or arms, also from the morphine. Yesterday morning it was bad enough that she dropped and broke two small dishes while preparing her cereal.
After our halibut dinner, we watched the new HBO miniseries, Pacific. It is a Tom Hanks-Steven Spielberg effort along the lines of their very successfully and critically acclaimed "Band of Brothers" from a few years back (which is an absolute must if you haven't seen it. You can rent or order from Neflix the DVD set). The opening episode tonight recreated the beginning weeks of the Battle of Guadalcanal which started in August of 1942 and didn't end for many months.
The other thing we are creeping up on is that my phacoemulsification is set for Wed am. I'd like to say I am not bothered by it but frankly, it is wearing on me. If all goes well, I'll be writing of the joys delivered by modern medicine by this time next week!
Next major item is Reenie's arrival at SJC on Tuesday evening. And my cataract procedure on Wednesday morning. Take care, everyone.
Sunday, March 14, 2010
Not a lot to say...
After we got Mary's doctors talking, picked up the neurontin (generic is gabapentin), and started Mary on the gabapentin--well, we are just kinda living day to day. I've left Mary on her own as I go to work and she seems to be managing just fine. Mary's pain is definitely down with the start of the gabapentin and she had not had any breakthrough pain since we started that medication. Her appetite is good--Chinese kung pao chicken and orange beef tonight, combination pizza last night and steak and potatoes on Thursday night--so no problems with either intake or retention of foods.
Ken Gehrkens, our (click here) jeweler, left for a 10 day Hawaiian vacation today so he had Mary's neckpiece 99% by 3:30 on Friday so that we could take it and have it for her anniversary event on March 22. After he gets back from Hawaii, he's got a couple of little things to add to the neck chain and then he wants pictures for his website. When his professional pictures are on the site, I will let you know. But, he did a great job on YAHT--Young, Active, Healthy and Thin! And, nicely done on the diamonds.
Reenie arrives on Tuesday evening and her first adult duty is to get me to Los Gatos El Camino Hospital at 6:30 am on Wednesday. This Phacoemulsification cannot be that big a deal. I was talking to our good friend Dick and he thought he had that procedure, or maybe his lovely spouse, Laverne, had it. In either case, he recalled it was no big deal. I hope he is right!
Mary's son Daniel honorably mustered out of the Army this week and drove from Fort Bliss in El Paso to Pennsylvania to set up his new life with Kamie. A four year commitment completed! And a pile of educational money for him to earn his credentials in whatever field he chooses but it sounds like it will be medical which is just great.
Mary and I decided we should re-arrange the kitchen to minimize the amount of bending she has to do given the way her back is behaving. My first move was to put the undercounter microwave on a counter and then put the various foodstuffs that were on that counter in the vacant undercounter space. Why did it not dawn on me that our two dogs would quickly declare "food frenzy" and quickly empty the counter of cookies, crackers, etc. No one was hurt, Mary caught them before they started to work on the chocolate bits and the first food to go were the lemon-ginger cookies. That undercounter space now has selected pots and pans and we still need to find a home for the remaining foodstuff items.
Today was doggie to the vet day. They get so excited when I put them in the car. When it was time to get them out of the car, Idjit Dawg bounded out of the car, ready to take on the world and dive into the next part of this clearly exciting journey. Shawna, on the other hand, recognized the vet's office and then scooted to the furthest corners of the car so I couldn't reach her! I finally caught her lead and had to literally drag her into the clinic. She just hates it! Anyway, they checked out fine and they held Shawna until mid-afternoon to get a sterile urine sample and we'll have those results on Mon-Tues. Shawna is going strong for a 16 year old, lemon-ginger cookie stealing dog!
Mary had a hair dresser appointment today, just a cut. Kevin was most gracious as usual and did a very nice job on her hair. He commented how fun the natural color is although he is itching to add a touch of color here and there. Mary is waiting until all these exotic pain killers are out of her system before she exposes herself to the color chemistry.
After Mary's hair cut, we picked up Shawna and spent a few minutes saying hello to our favorite vet, Dr Diane Wiese. When Diane saw me this morning during Shawna's exam, she very carefully and gently asked about Mary and even before I could answer was offering a hug. I did give her a hug and said, "This is what Mary's Oncologist did two week ago when she told Mary she was cancer free and should go live her life!" Dr. Wiese was thrilled to hear that! She knows we are friends with MaryR and mentioned that MaryR had been in on Friday. Dr. Wiese then went on to talk about how wonderfully strong the two Mary's are and how effective Stanford's Cancer program is! She has personal experience from about a dozen years ago but, in that case, Stanford could not spare her husband from the ravages of cancer. However, she did feel that even though the outcome was a downer, the medical care provided at Stanford was outstanding.
If you are reading this on Sunday, don't forget Daylight savings starts today--Spring Forward, Fall Back--so set your clocks and watches one hour ahead.
Oh, and Kamie wrote on her facebook page that she really wants an Apple iPad. I suggested to Kamie that it would be an excellent gift to receive from a certain US Army Medic, honorably discharged! And then she reminded me that her birthday is the same as mine, April 8, just five days after the iPad goes on sale! I need to tell Mary this story too!
Wednesday, March 10, 2010
Aligning the Doctors
Mary saw our primary MD today as suggested by the Oncologist. And, because Mary is still seeing the pain doctors, we arranged phone calls between the pain doc and the primary care doc to establish the rules of engagement. As a result, the pain doc will be in the lead until we get Mary's pain resolved and then the lead reverts to the primary care doctor.
Immediately after the two doctors talked, the pain doctor ordered neurontin for Mary. The use of this drug will build up over the next several weeks and should lead to the reduction of the morphine Mary is on now. The pain doctor is also focused on getting to the source of Mary's pain and was disappointed to hear that last week's medial branch nerve block had no apparent effect.
She is set to see him on the 23rd but he expressed interest in seeing her sooner given how much has changed. He saw her when she was on the fentanyl patch and liquid morphine which means she was zombie-like during the appointment. He was pleased the oncology folks found a 'better' pain solution and he wants further engagement given that change.
As for me, we are still on plan for the phacoemulsification next Wednesday.
Finally, Mary's weigh in at the primary doc's office showed her weight loss was about 25 lbs from early 2009 to now. As a diet program, we don't recommend cholangiocarcinoma so avoid it if at all possible.
Immediately after the two doctors talked, the pain doctor ordered neurontin for Mary. The use of this drug will build up over the next several weeks and should lead to the reduction of the morphine Mary is on now. The pain doctor is also focused on getting to the source of Mary's pain and was disappointed to hear that last week's medial branch nerve block had no apparent effect.
She is set to see him on the 23rd but he expressed interest in seeing her sooner given how much has changed. He saw her when she was on the fentanyl patch and liquid morphine which means she was zombie-like during the appointment. He was pleased the oncology folks found a 'better' pain solution and he wants further engagement given that change.
As for me, we are still on plan for the phacoemulsification next Wednesday.
Finally, Mary's weigh in at the primary doc's office showed her weight loss was about 25 lbs from early 2009 to now. As a diet program, we don't recommend cholangiocarcinoma so avoid it if at all possible.
Monday, March 8, 2010
Phacoemulsification
I don't know how to pronounce it, but its what they are gonna do to my (Pat's) right eye on St. Paddy's day--Phacoemulsification.
My doctor said to think of the lens as a transparent M&M. With the first needle, they break up and suction away the top layer of sugar coating and all the chocolate, leaving a "rim" and the "back side" sugar coating in place. The new lens is inserted via a needle into the empty shell. Procedure is done! 10, maybe 15 minutes in all. The hole in the eye is 2.7mm long or about one tenth of an inch--which takes virtually no time to heal. My vision will be half a diopter off of 20-20 which he does on purpose--not bad for an eye that has been awful since I was thirteen years old.
Reenie arrives Tuesday so we have an adult to supervise us once this starts. Mary is feeling good enough, we think, to handle things but just in case and she still cannot drive--the lady is still on morphine.
Thanks to all who expressed birthday wishes to Mary (its still not too late if you haven't gotten around to it!). My favorite was the neighborly exchange with Bill and Lillian. They decided to have margarita's and discovered they were out of Triple Sec. Well, in exchange for saving their drinks by providing Triple Sec, Bill made me one too (Mary isn't drinking with the morphine) so I toasted Mary's birthday with mine! Thanks to Bill and Lillian! Mary said she didn't mind...
All in all, Mary is clearly getting stronger each day. Grocery store on Saturday, Farmers' Market and grocery store on Sunday plus a walk up and down the block with the dogs. We just want to a) make the pain go away and b) get her off morphine as soon as we can.
One last trivia bit. My left eye is not yet suffering from cataract to the point surgery is needed but I am suffering a loss of vision in that eye. About a month ago, the doc wrote a new script to adjust my left glasses lens because the eye had changed slightly. It was clear during the February examination that my glasses needed updating--there was no other problem with the eye.
As I left his office on that bright, sunny day, it was clear I was in need of sunglasses. I found an old pair of prescription glasses in the glovebox of the car. When I put them on, my left eye could see perfectly! This old pair of glasses was from 1967! I bought them in college! Anyway, I had them checked this morning and the 1967 glasses are exactly the same prescription as the one he just wrote in Feb of 2010. I don't know why the eye went back to its former prescription, but it certainly has done so. His comment, "Ah, nothing like long-term stability!"
Sunday, March 7, 2010
A Nice and Quiet Birthday
Mary made the trek to Farmers' Market and then we went to Whole Foods. And, Mary did buy a new supply of walnuts, soft cheese and olives so that means, to me, she is feeling very good. We also picked up a mini-birthday cake that will provide a great wrap up to dinner tonight.
Another change is that Mary asked for fish for dinner tonight and we did get fresh petrale sole at market from our fishmonger. The last time we had our traditional Sunday fish dinner, the smell from cooking caused Mary's tummy to go south. That was in January so I am so excited that she wants to go back to a fish dinner, just because it seems so normal.
Mary has taken calls from her kids and grandkiddies this weekend to get her birthday wishes. We even got her son Daniel to sing Happy Birthday to her.
Daniel, it turns out, has signatures on his discharge papers as of Friday and expects the official "walk out the door" from Fort Bliss and the US Army sometime tomorrow! His 4 year tour of duty is complete and he will move to Pennsylvania where Kamie lives for the next phase of his life. Great job Daniel and good wishes for a wonderful future!
Mary is intently watching the red carpet show on E! and has programmed the TiVo to grab the awards ceremony itself. She does love to see what the movie folks are doing.
Mary has taken calls from her kids and grandkiddies this weekend to get her birthday wishes. We even got her son Daniel to sing Happy Birthday to her.
Daniel, it turns out, has signatures on his discharge papers as of Friday and expects the official "walk out the door" from Fort Bliss and the US Army sometime tomorrow! His 4 year tour of duty is complete and he will move to Pennsylvania where Kamie lives for the next phase of his life. Great job Daniel and good wishes for a wonderful future!
Mary is intently watching the red carpet show on E! and has programmed the TiVo to grab the awards ceremony itself. She does love to see what the movie folks are doing.
Happy Birthday!
Mary celebrates her birthday Sunday (7th). We are so glad she can celebrate this special day! What a year this has been!!
Mary received very nice gifts from her offspring and grandchildren and a book from my son et al.
Mary continues to get stronger. Today she really wanted to go grocery shopping. So we did! She came home and rested while I did more errands--including the acquisition of flowers, cards and a very nice gold penguin pin for someone's birthday.
All in all, Mary has had a great week although she is still on morphine. As I wrote previously, she will see the doctors at the two week mark and we'll learn the direction then.
Thursday, March 4, 2010
Getting Stronger
Mary is definitely getting stronger. She said she was going great guns today until an hour or so before her early afternoon MSContin dose. And, she never quite got back up to the same level after that dose. But, she was in the kitchen cleaning up when I got home late tonight. The Maids are coming tomorrow and Mary was preparing for the cleaning.
Mary and Ingrid ate the hamburgers we had planned for dinner. I didn't get home until almost 9pm so I ended up with a quick can of soup.
Mary reports the pain is still there but we now know we simply must be patient.
Mary and Ingrid ate the hamburgers we had planned for dinner. I didn't get home until almost 9pm so I ended up with a quick can of soup.
Mary reports the pain is still there but we now know we simply must be patient.
Wednesday, March 3, 2010
We are home
Shortly after my last posting, they called me into PACU2. Mary was dressed and ready to go so I went and got the car.
Once home, Shawna had frenzied herself by our absence. She runs out to the dog run and barks and then into the house and barks and repeats the entire time we are gone. Well, today is a rain day so when we got home, she was thoroughly soaked. We threw her in the utility sink, rinsed off all the stuff plus warmed her up and then blow dried her. Idjit Dawg, who normally does not participate in this frenzied activity, did do so today--rinse and dry a 2nd dog!
At that point, we both sat down and fell asleep. 4:30AM alarm clocks are too early given the time we normally fall asleep at night. And that is the reason you didn't hear from me until now.
The procedure went well overall. We've talked to the nurse and it is not expected that Mary will have immediate results. Hence, the planned visit with the doctor in two weeks. I guess neither of us understood that part of this protocol.
Mary is back on the MSContin to relieve pain and they told her to take partial doses going forward to see if the pain has lessened. If not, go back to full dose amounts. In other words (no don't say it, its a hospital-medical four letter word!) wait.
Overall, everything is OK. Mary ate a late breakfast before her nap and a lunch after we woke up so things are doing just fine.
Once home, Shawna had frenzied herself by our absence. She runs out to the dog run and barks and then into the house and barks and repeats the entire time we are gone. Well, today is a rain day so when we got home, she was thoroughly soaked. We threw her in the utility sink, rinsed off all the stuff plus warmed her up and then blow dried her. Idjit Dawg, who normally does not participate in this frenzied activity, did do so today--rinse and dry a 2nd dog!
At that point, we both sat down and fell asleep. 4:30AM alarm clocks are too early given the time we normally fall asleep at night. And that is the reason you didn't hear from me until now.
The procedure went well overall. We've talked to the nurse and it is not expected that Mary will have immediate results. Hence, the planned visit with the doctor in two weeks. I guess neither of us understood that part of this protocol.
Mary is back on the MSContin to relieve pain and they told her to take partial doses going forward to see if the pain has lessened. If not, go back to full dose amounts. In other words (no don't say it, its a hospital-medical four letter word!) wait.
Overall, everything is OK. Mary ate a late breakfast before her nap and a lunch after we woke up so things are doing just fine.
Waiting, waiting
It has been 35 minutes since the board showed Mary going into PACU2. No further info at this time.
Now I am really confused
The color code is
Green is in the OR.
Blue is in PACU1
Pink is PACU2
She went from green to pink, back to green and then to pink again. What happened to blue?
I expect to be called momentarily to either join her or to be told to get the car and bring it to the front door. Otherwise, no information.
Trivia
At Stanford, they use different acronyms than is typical. For example, when we were in the Emergency Room, commonly called ER everywhere else, Stanford calls it ED -- Emergency Department. And, a whole bunch of guys walk around with badges that give their name along with big fat letters that say ED.
Post-op is not post-op. Post-op is PACU and as I noted in my previous posting, its PACU1 and PACU2. PACU? Post Anesthesia Care Units, Phases I and II. Who knew?
False alarm or not
The status board is color coded. Mary is case 102753 and as I noted in the prior entry, it was colored for post-op already. When I arrived back in this waiting area, its now coded for "in the OR" so someone pushed the wrong button for a moment or two--just when I was looking at it. Oh well.
It is 8:42 and if the doc arrived at 8:15, then she should be just about done in the OR.
The written instructions state that I will not be allowed into post op #1 but I will be called into post-op #2.
Now its 8:45 and she is color coded for post-op #1. Perhaps they'll call me in, who knows.
7:30 is not 7:30
Hospital time, of course. The doctor was diverted to an emergency procedure so they told us it would be a 25 min delay. After 45 min, the nurse came and took Mary into the OR. OK, I can live with that, but then she said, "We haven't seen the doctor yet but he will be here momentarily."
Mary's prep was straightforward--they took forever to find a good vein, nothing new there. They were also concerned with her low blood pressure. They came to an understanding, injected some saline solution into our girl and decided to proceed.
We did ask the rambling resident about which vertebrae is the target. She confirmed it was T6 or T7 and they would confirm before they did the procedure. I don't get it, the Oncologists were worried about T10. I guess she could tell my concern so she had Mary lean forward and started putting pressure on her vertebrae one at a time. She reacted at T6/T7 so I feel better. Mary on the other hand, felt some considerable pain.
With Mary rolling to the OR, I was dismissed. I found the cafeteria and am enjoying a "why bother" and a bagel. A "why bother," what is that you ask? Well, in Napa a few years ago I went into a coffee shop (not Starbucks) and asked if they could do a large latte, two shots, decaf and non-fat milk. The sweet looking clerk behind the counter shot back with "Up here, sir, that is called a 'why bother'". Properly chastised, I now refer to my favorite coffee flavored drink as a why bother.
I just took my last bite of bagel and checked the status board and Mary is supposedly in post-op already. They told us it would be fast, but that is incredible if it is correct!
Medial Branch Nerve Block Procedure
We arrived at Stanford's Redwood City facility at 6:00AM. Mary has been taken into the pre-op area where they put her in a hospital gown, take all her vital signs and then pepper her with questions. They will invite me to join her in a few minutes.
The procedure is set for 7:30 but then again, that is hospital time.
I will keep you posted, as always
Mary has been doing so much better the last couple of days. She is still wonky from morphine but she is clearly on the mend. Thanks to Donna who came by for lunch yesterday. As Mary says, it gets lonely hanging out all day with no one around--and not able to drive because of the morphine. If Mary naps, it starts in the late afternoon. She is very much aware and alert most of the day. Ingrid will buzz in for a bit around noontime today on the assumption that we hold to the schedule--but it is a hospital schedule.
John commented yesterday that Mary must be feeling so much better if I started the last blog entry commenting about the hockey game. Well, let's see, we are both from Minnesota. I played hockey from grade school through college--in fact, I coached in a parks and rec program several winters. My hero was Herb Brooks partly because my Dad worked with his father, partly because I spent Herb's college career watching him play in the old Williams Arena at the U of Minnesota, and who can forget the 1980 Olympics? Herb was a few years older than I was and he gave me a pair of his used maroon and gold Minnesota Gopher hockey socks--the one's that fit over the shin-knee guards. I was hot stuff for the simple reason those were the days when you could not buy replica uniforms of any kind. When I would get on the ice, the kids who didn't know would ask if I had tried out with the Gophers--well, until they saw me fall on my a..
In other words, we are hockey fans. Not big fans of the NHL, but we love the game.
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