A PleruX drain was installed in my abdomen on Wednesday and was a little more involved than just having a paracentesis. I had conscious sedation this time, and some pain since then, although that is getting better.
This afternoon Jana and I performed my first drain. They had drained about 1 L on
Wednesday, and we drained another liter today. Today's drain was done more to learn the procedure than to remove fluid, so I was surprised when we filled a liter vacuum bottle. We'll drain again in a couple of days to see if this first procedure was a fluke or whether I need to drain frequently. I had thought once a week might be enough.
David
PS When we returned home from having Afghan kabobs this evening, I noticed that my shirt was wet under my jacket. It turned out that my dressing was leaking fluid, so I called UC Hospital to talk with the Interventional Radiology fellow on call. He said that I probably had not drained enough fluid from my abdomen and to do the procedure again. I was skeptical, but we did the procedure. I was surprised to drain another liter of fluid which make 2,000 ml, the maximum for one day. It looks like I may be doing more draining than I expectd.
DD
*Sung to the tune of "I Can See Clearly Now."
June 23, 2017
June 20, 2017
The Symptoms of Dying
Here's a great article for those of us who are getting older and our families and friends--The Symptoms of Dying.
https://www.nytimes.com/2017/06/20/well/live/the-symptoms-of-dying.html?hpw&rref=health&action=click&pgtype=Homepage&module=well-region®ion=bottom-well&WT.nav=bottom-well
https://www.nytimes.com/2017/06/20/well/live/the-symptoms-of-dying.html?hpw&rref=health&action=click&pgtype=Homepage&module=well-region®ion=bottom-well&WT.nav=bottom-well
June 10, 2017
A Two-Part Update
"Draining the Swamp"--The Sequel
On Tuesday I went in for another draining of the fluid in my belly. This time they removed 3.6-3.8 liters of fluid. Knowing when to request draining is difficult because the fluid collects slowly, so there is no big change in my symptoms from day to day. However, I was so uncomfortable last week that I requested the procedure, and my oncologist's office arranged for me to have it on Tuesday.
While waiting to go to the operating room I asked the nurse about a permanent drain that I could use to empty the fluid on my own at home. She brought in a DVD about the PluerX system that Jana and I watched. Yesterday, I asked my oncologist to put in an order for the installation procedure which will be performed on 21 June.
The procedure involves the insertion of a drainage tube into my abdomen. The tube remains in place, and the end sticking out of the side is covered between use by a bandage. When the time comes for another drain (perhaps once a week), I will attach a vacuum bottle to the tubing and suck out the fluid. I should be much more comfortable. For the curious, the first two minutes of the video on this page shows how it is used: http://www.bd.com/en-us/offerings/capabilities/interventional-specialties/drainage/about-the-pleurx-drainage-system/patient-information-pleurx-system/how-to-drain-at-home
Late Tuesday afternoon I had a CT scan in preparation for my visit with my oncologist on Wednesday.
The End of Cancer Treatments
My CT showed that my tumors were not stopped by the three infusions of Avastin that I had over the past nine weeks. Consequently, we've run out of treatment options. My oncologist would probably prescribe another chemo, but I see no reason to go through chemo again when I don't think it would do any good against mesothelioma. There are probably one or two meso-specific treatments in development, and if they are approved by the FDA in time, I'll give them a try.
We had a talk about end-of-life decisions, and he gave me a copy of Five Wishes, a living will that provides a plain-language approach to those decisions (https://www.agingwithdignity.org/five-wishes/about-five-wishes). He said it is hard to make a prognosis because people often go downhill slowly and then quickly drop off a cliff. One can look at the trajectory of decline, but it's not very useful. He thinks I have less than six months left. I'll have a CT in eight weeks so I can see how things are progressing--a check of trajectory.
I don't want my readers to be saddened by this news. We all knew it's been inevitable that this day would come (for all of us). It's kind of a relief to know that there are no more treatment options. It's time to research hospice options in Denver and to get the most out of my remaining days.
PS I learned this week that John Shively, a colleague for two years in the DoDDS-Pacific Director's Office, died from mesothelioma. We got back in touch a couple of years ago when I learned he had mesothelioma, and it was good to compare notes. I thought he was holding his own against the cancer, but I was wrong. Posts on his Facebook page testify to the affection and high regard colleagues and students had for him.
On Tuesday I went in for another draining of the fluid in my belly. This time they removed 3.6-3.8 liters of fluid. Knowing when to request draining is difficult because the fluid collects slowly, so there is no big change in my symptoms from day to day. However, I was so uncomfortable last week that I requested the procedure, and my oncologist's office arranged for me to have it on Tuesday.
While waiting to go to the operating room I asked the nurse about a permanent drain that I could use to empty the fluid on my own at home. She brought in a DVD about the PluerX system that Jana and I watched. Yesterday, I asked my oncologist to put in an order for the installation procedure which will be performed on 21 June.
The procedure involves the insertion of a drainage tube into my abdomen. The tube remains in place, and the end sticking out of the side is covered between use by a bandage. When the time comes for another drain (perhaps once a week), I will attach a vacuum bottle to the tubing and suck out the fluid. I should be much more comfortable. For the curious, the first two minutes of the video on this page shows how it is used: http://www.bd.com/en-us/offerings/capabilities/interventional-specialties/drainage/about-the-pleurx-drainage-system/patient-information-pleurx-system/how-to-drain-at-home
Late Tuesday afternoon I had a CT scan in preparation for my visit with my oncologist on Wednesday.
The End of Cancer Treatments
My CT showed that my tumors were not stopped by the three infusions of Avastin that I had over the past nine weeks. Consequently, we've run out of treatment options. My oncologist would probably prescribe another chemo, but I see no reason to go through chemo again when I don't think it would do any good against mesothelioma. There are probably one or two meso-specific treatments in development, and if they are approved by the FDA in time, I'll give them a try.
We had a talk about end-of-life decisions, and he gave me a copy of Five Wishes, a living will that provides a plain-language approach to those decisions (https://www.agingwithdignity.org/five-wishes/about-five-wishes). He said it is hard to make a prognosis because people often go downhill slowly and then quickly drop off a cliff. One can look at the trajectory of decline, but it's not very useful. He thinks I have less than six months left. I'll have a CT in eight weeks so I can see how things are progressing--a check of trajectory.
I don't want my readers to be saddened by this news. We all knew it's been inevitable that this day would come (for all of us). It's kind of a relief to know that there are no more treatment options. It's time to research hospice options in Denver and to get the most out of my remaining days.
PS I learned this week that John Shively, a colleague for two years in the DoDDS-Pacific Director's Office, died from mesothelioma. We got back in touch a couple of years ago when I learned he had mesothelioma, and it was good to compare notes. I thought he was holding his own against the cancer, but I was wrong. Posts on his Facebook page testify to the affection and high regard colleagues and students had for him.
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