Michelle slept a little better last night, but still hardly at all. The nurses had to hang a new bag of antibiotics every hour, which is obviously disruptive to sleep. Her pain is under control.
We spoke with both the oncologist and the infection disease specialist and got a small update. They expect Michelle to be in the hospital at least 2 more days. It will take that long for the cultures to grow from her blood and abdominal fluid samples taken yesterday.
Her white cell count has declined a bit which may be a sign that the infection is abating somewhat. Mostly we're in a wait and see mode, while trying to keep her comfortable.
Thank you for your prayers and all the kind words we received in response to yesterday's post.
Monday, May 31, 2010
Sunday, May 30, 2010
Up, Down, and All Around
Michelle was admitted to the hospital around midnight last night for severe abdominal pain and an apparent abdominal infection. Her pain is under control and we're waiting on the results of several cultures to figure out what's going on. I'll use the blog to keep everyone posted on her progress at least daily, so please check your email if you want updates.
Here are all the gory details since the last post on May 5:
We met with a surgeon, Dr. Collins, on Friday May 7. He's the same surgeon who installed her IV port in January 2009. After consultation we decided to go ahead with surgery to implant an abdominal-vascular shunt, called a Denver Shunt, to carry the ascites fluid from Michelle's abdomen through her left jugular vein and into her Superior Vena Cava, one of the primary collector veins that returns blood to the heart. The shunt consists of a 4-inch long perforated tube that resides in her abdomen, tubing that is tunnelled just under her skin up the left side of her trunk, and a small manual pump that sits on top of her lower few left ribs.
The surgery on Monday 5/17 was successful and Michelle came through with flying colors. She stayed in the hospital overnight for observation and was released the next morning.
We were surprised to learn from the Physician's Assistant who wrote her discharge orders that she would have to operate this manual pump to move the fluid. It turns out that while there is some automatic transfer of fluid from abdomen to bloodstream, this only occurs when she is laying down, and she will always have to operate the pump to stay ahead of the fluid accumulation.
The pump only moves 3 cc (ml) of fluid at a time, and her body has been retaining fluid at a rate of up to 3.6 liters (3,600 cc) per week. As a result, she needs to operate the pump 100-120 times per day just to keep up. Now that her incisions have healed quite a bit, it is not painful but during that first week after surgery it was agonizing.
As the week progressed, she experienced normal pain associated with the healing incisions, but the fluid gained rapidly. We saw another doctor in the surgeon's office on Friday who recommended a paracentesis immediately and to see Dr. Collins on Tuesday, his next day in the office. What a disappointment! We had hoped that the surgery would mean an end to paracenteses.
In the middle of all this mess, one of Michelle's best friends from college, Gay Todd, spent the weekend with us. She flew in from Michigan Thursday night and stayed until Sunday morning. It was wonderful to spend some time with her, and was a welcome reminder of how much our friends still care for us.
They tapped about 1.5 liters on Monday and we saw Dr. Collins on Tuesday. He confirmed that we were operating the pump correctly and that it wasn't blocked or malfunctioning. It was then he gave us a better explanation of how much fluid it moved and how much pumping was necessary to keep ahead of the retention. It's hard to judge how much fluid will move through the shunt on its own because there are many variables that affect the process. Essentially Michelle needs to pump 30-40 times in the morning and at night and see if she's able to keep ahead of the accumulation.
Tuesday afternoon, Michelle vomited. Not unusual by itself, she has had occasional bouts of nausea for the last several weeks, even before surgery, but then she upchucked again on Wednesday. On Thursday she couldn't keep any solid food down so we called the Oncology doctors. They recommended we use all the anti-nausea drugs in our arsenal and head to the Emergency Department if we can't get it under control.
Friday was a little better, Michelle was able to keep some food down, but by mid-day Saturday she had a fever and her abdomen had become very painful. We weren't able to get ahead of the pain and decided to take her to the ER. Her white cell count was elevated and an abdominal CT scan indicated her colon was inflamed (colitis), so they decided to admit her.
This morning, the surgeon Dr. Collins stopped by and told Michelle that they wanted to do another paracentesis so they could examine the fluid for infection. If the fluid is infected, the pump is infected and will have to come out. He also explained that the shunt is not a replacement for paracentesis, but that it should reduce the frequency. Given that we had already reached the point of almost 4 liters of accumulation in 7 days, it wouldn't have been long before twice weekly procedures would be needed. (Not an exciting prospect - despite local anesthetic the procedure is quite painful.) Hopefully we can keep it to every other week or longer, but time will tell.
They removed 2.5 liters of fluid during the paracentesis and sent if off to the lab for cultures.
It's about 1:30 Sunday afternoon now, and Michelle just finished her "full" liquid lunch. This was upgraded from the clear liquids she had for breakfast; she had some nasty tasting cream of chicken soup and a little bit of vanilla ice cream for dessert. The next consultation today will be with her pain doctor to adjust the dosing level of her intrathecal pain pump so she doesn't need quite so much IV pain relief. As you may recall from last June, it was high doses of IV pain medicine that led to complications that kept her in the hospital for 2 weeks.
As I said up top, I'll try to post updates at least daily until Michelle comes home. In the mean time, please keep us in your thoughts and prayers or at least send some happy thoughts our way. We can use all the positive energy we can get.
Here are all the gory details since the last post on May 5:
We met with a surgeon, Dr. Collins, on Friday May 7. He's the same surgeon who installed her IV port in January 2009. After consultation we decided to go ahead with surgery to implant an abdominal-vascular shunt, called a Denver Shunt, to carry the ascites fluid from Michelle's abdomen through her left jugular vein and into her Superior Vena Cava, one of the primary collector veins that returns blood to the heart. The shunt consists of a 4-inch long perforated tube that resides in her abdomen, tubing that is tunnelled just under her skin up the left side of her trunk, and a small manual pump that sits on top of her lower few left ribs.
The surgery on Monday 5/17 was successful and Michelle came through with flying colors. She stayed in the hospital overnight for observation and was released the next morning.
We were surprised to learn from the Physician's Assistant who wrote her discharge orders that she would have to operate this manual pump to move the fluid. It turns out that while there is some automatic transfer of fluid from abdomen to bloodstream, this only occurs when she is laying down, and she will always have to operate the pump to stay ahead of the fluid accumulation.
The pump only moves 3 cc (ml) of fluid at a time, and her body has been retaining fluid at a rate of up to 3.6 liters (3,600 cc) per week. As a result, she needs to operate the pump 100-120 times per day just to keep up. Now that her incisions have healed quite a bit, it is not painful but during that first week after surgery it was agonizing.
As the week progressed, she experienced normal pain associated with the healing incisions, but the fluid gained rapidly. We saw another doctor in the surgeon's office on Friday who recommended a paracentesis immediately and to see Dr. Collins on Tuesday, his next day in the office. What a disappointment! We had hoped that the surgery would mean an end to paracenteses.
In the middle of all this mess, one of Michelle's best friends from college, Gay Todd, spent the weekend with us. She flew in from Michigan Thursday night and stayed until Sunday morning. It was wonderful to spend some time with her, and was a welcome reminder of how much our friends still care for us.
They tapped about 1.5 liters on Monday and we saw Dr. Collins on Tuesday. He confirmed that we were operating the pump correctly and that it wasn't blocked or malfunctioning. It was then he gave us a better explanation of how much fluid it moved and how much pumping was necessary to keep ahead of the retention. It's hard to judge how much fluid will move through the shunt on its own because there are many variables that affect the process. Essentially Michelle needs to pump 30-40 times in the morning and at night and see if she's able to keep ahead of the accumulation.
Tuesday afternoon, Michelle vomited. Not unusual by itself, she has had occasional bouts of nausea for the last several weeks, even before surgery, but then she upchucked again on Wednesday. On Thursday she couldn't keep any solid food down so we called the Oncology doctors. They recommended we use all the anti-nausea drugs in our arsenal and head to the Emergency Department if we can't get it under control.
Friday was a little better, Michelle was able to keep some food down, but by mid-day Saturday she had a fever and her abdomen had become very painful. We weren't able to get ahead of the pain and decided to take her to the ER. Her white cell count was elevated and an abdominal CT scan indicated her colon was inflamed (colitis), so they decided to admit her.
This morning, the surgeon Dr. Collins stopped by and told Michelle that they wanted to do another paracentesis so they could examine the fluid for infection. If the fluid is infected, the pump is infected and will have to come out. He also explained that the shunt is not a replacement for paracentesis, but that it should reduce the frequency. Given that we had already reached the point of almost 4 liters of accumulation in 7 days, it wouldn't have been long before twice weekly procedures would be needed. (Not an exciting prospect - despite local anesthetic the procedure is quite painful.) Hopefully we can keep it to every other week or longer, but time will tell.
They removed 2.5 liters of fluid during the paracentesis and sent if off to the lab for cultures.
It's about 1:30 Sunday afternoon now, and Michelle just finished her "full" liquid lunch. This was upgraded from the clear liquids she had for breakfast; she had some nasty tasting cream of chicken soup and a little bit of vanilla ice cream for dessert. The next consultation today will be with her pain doctor to adjust the dosing level of her intrathecal pain pump so she doesn't need quite so much IV pain relief. As you may recall from last June, it was high doses of IV pain medicine that led to complications that kept her in the hospital for 2 weeks.
As I said up top, I'll try to post updates at least daily until Michelle comes home. In the mean time, please keep us in your thoughts and prayers or at least send some happy thoughts our way. We can use all the positive energy we can get.
Wednesday, May 5, 2010
Outlier or Miracle?
Yesterday Michelle and I went to see her oncologist, Dr. Marschke. We learned a lot and got some particularly good news about the doctor's expectations for Michelle.
The main topic of the moment was ascites: fluid accumulation around Michelle's intestines. As you probably have read, about every 10-12 days for the last several weeks we've had to take Michelle for a paracentesis to draw off the accumulated fluid. She had procedure #5 this past Monday - they withdrew 2 liters of fluid, about average so far.
Laboratory analysis of the fluid has shown that it's not due to infection, and since it doesn't contain any malignant cells which would indicate cancer as the source, it's a something of a mystery where the fluid is coming from.
We did learn a little more about what to expect: once it starts, it rarely stops. Dr. Marschke told us to expect the need to have fluid relieved to occur more and more often, up to twice per week. We discussed a couple of options to drain the fluid without paracentesis, and have an appointment with a surgeon on Friday to explore the more promising option.
Here's the good part. We asked Dr. Marschke about Michelle's life expectancy. He said that first we have to understand that Michelle's survival so far is amazing. She has lived 5 standard deviations past the mean life expectancy for patients with cholangiocarcinoma (6 months). That means she is an extremely rare case, the extremest of outliers.
In my book, that's a miracle. Here we are 18 months after Michelle first fell ill, and she's still going strong. Dr. Marschke went on to say that in addition to surviving well past any reasonable expectations, the has been no evidence of cancer activity in her body for many months now. The tumor marker, antigen CA19-9, has been bouncing around the 400-600 level for the past 4 months. She's still tolerating the chemotherapy treatments well. She has experienced no fevers, unexplained bleeding, neurological impairment or any other common side effects.
The bottom line: he expects Michelle to live many more months, perhaps even 1 or 2 more years.
Wow.
Call it a statistical anomaly. Call her an outlier. Call it good luck. Humbug!
Prayer. Works. Hallelujah! Amen!
Please understand that heading into this appointment, I was prepared to hear the worst. I was half expecting that the ascites were a sure sign that the cancer was on the march, or that her organs were breaking down, or that something really, really bad was happening. I never expected him to tell us this. I'm still floored.
And ready to make some plans.
You see, when you've been living day to day for as long as we have, you kind of stop making long term plans. When you never know what nasty surprise is coming just around the next corner, you start to get skittish about planning something for next month. Or next week.
Well, I'm here to tell ya I'm doggone sick and tired of living that way and it's way past time to do something about it! So we're going to Vegas, baby! at the end of this month.
And then for the 4th of July we're going to San Francisco, Seattle, or Vancouver.
And it'll be NYC or Washington DC for Labor Day, and maybe a 4 day cruise when the weather starts getting cold again.
And we'll deal with what happens when it happens instead of sitting around waiting for the other shoe to drop.
In other news...
Michelle's voice still hasn't returned, so she has an appointment next week with the Ear, Nose, and Throat doctor to explore options for fixing her paralyzed vocal cord.
The main topic of the moment was ascites: fluid accumulation around Michelle's intestines. As you probably have read, about every 10-12 days for the last several weeks we've had to take Michelle for a paracentesis to draw off the accumulated fluid. She had procedure #5 this past Monday - they withdrew 2 liters of fluid, about average so far.
Laboratory analysis of the fluid has shown that it's not due to infection, and since it doesn't contain any malignant cells which would indicate cancer as the source, it's a something of a mystery where the fluid is coming from.
We did learn a little more about what to expect: once it starts, it rarely stops. Dr. Marschke told us to expect the need to have fluid relieved to occur more and more often, up to twice per week. We discussed a couple of options to drain the fluid without paracentesis, and have an appointment with a surgeon on Friday to explore the more promising option.
Here's the good part. We asked Dr. Marschke about Michelle's life expectancy. He said that first we have to understand that Michelle's survival so far is amazing. She has lived 5 standard deviations past the mean life expectancy for patients with cholangiocarcinoma (6 months). That means she is an extremely rare case, the extremest of outliers.
In my book, that's a miracle. Here we are 18 months after Michelle first fell ill, and she's still going strong. Dr. Marschke went on to say that in addition to surviving well past any reasonable expectations, the has been no evidence of cancer activity in her body for many months now. The tumor marker, antigen CA19-9, has been bouncing around the 400-600 level for the past 4 months. She's still tolerating the chemotherapy treatments well. She has experienced no fevers, unexplained bleeding, neurological impairment or any other common side effects.
The bottom line: he expects Michelle to live many more months, perhaps even 1 or 2 more years.
Wow.
Call it a statistical anomaly. Call her an outlier. Call it good luck. Humbug!
Prayer. Works. Hallelujah! Amen!
Please understand that heading into this appointment, I was prepared to hear the worst. I was half expecting that the ascites were a sure sign that the cancer was on the march, or that her organs were breaking down, or that something really, really bad was happening. I never expected him to tell us this. I'm still floored.
And ready to make some plans.
You see, when you've been living day to day for as long as we have, you kind of stop making long term plans. When you never know what nasty surprise is coming just around the next corner, you start to get skittish about planning something for next month. Or next week.
Well, I'm here to tell ya I'm doggone sick and tired of living that way and it's way past time to do something about it! So we're going to Vegas, baby! at the end of this month.
And then for the 4th of July we're going to San Francisco, Seattle, or Vancouver.
And it'll be NYC or Washington DC for Labor Day, and maybe a 4 day cruise when the weather starts getting cold again.
And we'll deal with what happens when it happens instead of sitting around waiting for the other shoe to drop.
In other news...
Michelle's voice still hasn't returned, so she has an appointment next week with the Ear, Nose, and Throat doctor to explore options for fixing her paralyzed vocal cord.
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