I Should Be Empty Now. . .*

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."

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&region=bottom-well&WT.nav=bottom-well

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.

An Interesting, if Unexpected, Day at the Hospital

I thought that this was going to be an unusual week in which I did not have an appointment at the University of Colorado Hospital. I was wrong.

I noted in my last post that fluid was collecting in my abdomen. That continued and caused several unpleasant problems, so last night I sent a message to my oncologists office asking what I needed to be evaluated for a paracentesis—a procedure to drain the fluid from my abdominal cavity. This morning I received a call from the nurse at my oncologist's office asking if I could come in for labs and a visit with the oncology nurse practitioner (NP) and a paracentesis later in the day. Jana and I rushed around and headed to the hospital. I had my port accessed and my labs drawn. Then I saw the NP and went over to IR.

The procedure was interesting. After talking to the radiologist and signing the relevant papers, they wheeled me into the procedure room—a very impressive room with all kinds of equipment. First, the radiologist came in and used ultrasound to determine where the fluid was pooling. I was happy to learn that for this procedure, I would have no anesthesia. I would be awake and could observe what was happening. After deciding where he would install the drain, the nurses prepped me and covered me from head to toe with a sterile drape. Then the doctor returned and performed the procedure.

First, he injected a local numbing agent which stung and was the only pain associated with the paracentesis. He then inserted a needle into my side passing through the skin, muscle, and the abdominal wall using ultrasound as his guide to where the needle was going. As I understand it, once the needle was in place he pushed in a rubber tube that went around the needle and then withdrew the needle. Using a syringe, he withdrew three specimens of about 100 ml each. Then he attached a pump the the tubing and started “draining the swamp.”

Now an interesting procedure became boring. The doctor took a phone call and went out for a while. The nurses hung around doing something at computer screens and watching over the fluid flow into the receptacle. I just laid there with nothing to do. I looked around the room trying to figure out what all of the equipment was used for (with little insight). I was lying on my back with the tubing running from the insertion point on my side, over my right shoulder, and to the pump. If I turned my head to the right I could watch the flow in the tubing. There were bubbles in the fluid which allowed me to see the speed of the flow. So I watched that for a while and saw how the flow stopped and reversed when one container was filled and was replaced. Not very exciting.

They removed about four liters of fluid from my abdomen. When I got home I compared my weight then with my weight when I got up this morning. I lost 9.2 pounds. Before the procedure, if I lay on my back and moved my hands down my skin across my ribs, my abdomen would bulge upward at the end of the ribs like a pregnant woman. Afterwards, my hand fell off of a cliff when the got to the ends of the ribs.

My assumption has been that the fluid collecting in my abdomen was caused by my cancer just as the pleural effusion I had seven years ago led to the discovery of my mesothelioma. It may be that the abdominal mesothelioma is not the only cause. The doctor said that the load of disease in my right pleural area may be impeding the flow of lymph causing it to pool in the abdomen. As I understand it, as blood passes through the body, blood plasma passes through the vessel wall in order to take nutrients, immune cells, etc. to the tissues. This fluid then passes back through the lymphatic system to be dumped back into the blood near the heart. The flow goes up from the legs towards the heart; however, my tumor burden may be impeding the flow causing the fluid to back up in the abdomen. He said there are ways of controlling the flow, and he would talk with my oncologist about this potential complication.

After he put on a dressing, I was wheeled back to the nursing area where they gave me some cranberry juice and made me wait 30 minutes before I was released.

All in all it was an interesting trip to the hospital. The good people in my oncologists office were champs, going all out to arrange for the paracentesis on a short schedule. Luckily there was an opening in IR that they could take advantage of. And, of course, Jana was a champ as usual for getting me there, waiting through the procedure, and bringing me home. 

David

The Beginning of the End

Since my last entry I have been in a holding pattern with regards to my mesothelioma. In the interim, I had cataract surgery on my right eye which went very well. It was pain free and except for my astigmatism, I now have clear distance vision for the first time since I was in the third grade. The thing that impressed me the most was how much brighter and more colorful the world appears now through my right eye. i had no idea I was looking through a yellow-brown haze. I gather that this is a common revelation to others who've had the surgery. I'll have my other eye done on Thursday.

Back to mesothelioma. On Monday I had my first CT since January, and on Wednesday we saw my oncologist for the results.  They were not good.  My mesothelioma has grown through the diaphragm into my abdomen. 

The abdomen is lined with the same kind of tissue as the chest cavity, so the cancer seem very happy to be in the abdomen and is flourishing. It is forming a crust across the top of my liver and down the sides.  However, the lungs seem pretty stable.  Dr. Camidge offered a new chemotherapy and a monoclonal antibody that works against the formation of new blood vessels (thereby starving the cancer).  I asked the prognosis if I did not do anything, and he said probably less than a year.  I told him that I didn't have much faith in the chemo helping, and I didn't want to spend the time I have left under the effects of both the chemo and the cancer.  He understood, and we agreed to give the antibody (minus the chemo) a six week trial and regroup then. 

The monoclonal antibody is called Avastin (bevaciizumab). Monoclonal antibody drugs (generic name ends in ..mab) are man-made antibodies that work through the immune system. Avastin is a member of the class of drugs that are designed to combat angiogenesis, the creation of new blood vessels. The idea is that the cancer needs new blood vessel to grow, and if the drug prevents the creation of the blood vessels, the cancer will stop growing. Avastin is not as effective as some of the newer immuno drugs, and as my doctor recommended is usually given with a chemotherapy agent, so I don't expect much, if any, improvement; however, I'll give it a try. I get my first infusion on Wednesday and then again three week later, assuming that insurance will pay for it. Avastin is not licensed for mesothelioma.

It looks like I'm entering the beginning of the end, and it's time to get my affairs in order. When I was first diagnosed seven years ago, I thought I had six months to live. I realized intellectually that I had an incurable disease, but it never seemed real or my death imminent. After a couple of years when my cancer showed itself to be rather indolent, I realized that I had a longer life expectancy than that. Now it seems clear that my time is getting short, and for the first time i feel my mortality emotionally, a feeling that meso going to take my life.

PS. I knew something had changed because my belly looks like it's inflated. Even our five-year-old granddaughter noticed and remarked on it. When examining me, my doctor said I look like I'm pregnant. He quickly said that I was one of only a few patient that he could say that to. I appreciated the fact that we have gotten to know one another well enough for him to understand that I would not be offended. 

 David

Out of the Clinical Trial and into a Holding Pattern

As of Tuesday, I am no longer participating in the clinical trial. Given that the last CT showed no evidence of effectiveness, and after the supraventricular tachycardia and the pericardial effusion, my oncologist decided that the risk of serious side effects was too great. I was ready for three more weeks, but he wouldn't agree to it. Of course, I am disappointed, but I have to admit that I am relieved and feel somewhat better—more energy. Do I feel better because the end of the trial created a placebo effect, or do I really feel better? Who knows? We'll have to see what happens. The plan is to do nothing for sixty days, and then have a CT to assess my status at that time and see what the next move should be.

The next day I had a very good appointment with my cardiologist. I'm also in a wait-and-see position with my heart. I'll have periodic echocardiograms to see if the pericardial effusion (fluid build up in the sack around the heart) comes back. If it does, I'll see a cardiovascular surgeon to determine whether I need a pericardial window. That is an operation in which they cut a hole in the pericardium to let the effusion drain into the chest cavity. It is not a minor surgery, so if I need it, the question is whether I am up to the surgery.

Yesterday I got a pathology report on the fluid drained from the pericardium. Combined with the previous reports we know that the fluid contained no aerobic or anaerobic bacteria, no malignant cells, but did contain a few mesothelial cells. The leading hypothesis is that the effusion was caused by mesothelioma in my pericardium. The pleural effusion that I was having at this time seven years ago was caused by my then-undiagnosed mesothelioma, so it doesn't seem like much of a stretch to believe that the recent effusion is also caused by mesothelioma, but this time in my pericardium.

David

Clinical Trial Update, Emergency Room Visits and Hospitalization

Clinical Trial: I'm now in the 14^th week of my clinical trial. Last week I had a CT scan that showed that the two immunological drugs do not seem to be reducing my tumors. It appears that my tumors have increased in size by about 10%. If they increase by 20% I will not be able to stay in the study. My oncologist and the oncology fellow who was with him didn't come out and encourage me to stop the trial, but they seemed to favor quitting and going back to chemotherapy. I had read that sometime the tumors seem to increase in size before shrinking. They did not think that was the case because in only happens rarely. After discussion, I decided to stay in the trial for two more cycles when I'll have a CT, and we will see if the drugs have failed.

I am not excited to try a new chemotherapy. I'm not sure I can psychologically or physically take another chemo drug. My treatments have extended my life far beyond what is normal in mesothelioma, but they also take a toll on the body and mind. My oncologist said there is no way to know, but I might live one or two years if I stopped treatments entirely. Of course, my health would deteriorate during those months.

Emergency Room Visits and Hospital Stay: On Tuesday evening (Jan 24^th) while watching a movie, I noticed that I was feeling funny and checked my oxygen level and heart rate. My heart was beating in the mid-130's while just sitting on the couch. When the movie was over, I called the Phase I Trial Clinic oncologist on call and was told to go to the emergency room. They diagnosed me as suffering from supraventricular tachycardia (SVT), a condition in which the signal to start a heart beat comes from an abnormal location in the heart. The result is a rapid heart (tachycardia) rate and an abnormal ECG wave form. To correct the problem,you might say they had to punch my heart's reset button by stopping my heart and bringing back the normal rhythm. The procedure has the possible side effect of stopping the heart completely, so they attached pads from a defibrillator on my chest and back in case my heart did not restart and the shock were needed. I was not thrilled at the prospect of having my heart restarted by a defibrillator. To stop the heart they gave me a dose of adenosine, a substance that is normally in the body, but not in large concentrations.

It was a little like medical theater because of the size of the group of people gathered around to watch. In addition to the doctor and nurse doing the procedure, there were several others who may have been medical students or residents. The doctor told me that there would be some discomfort as my heart slowed down and stopped. Some people describe it as being kicked the the chest. The setup was such that I could hear my heart beat through a speaker. A couple of seconds after the injection of the adenosine, I could hear my heart rate decrease. As it neared the bottom, I was very short of breath and had to breath quickly. It was unpleasant but not like being kicked in the chest. Perhaps it was like having your breath knocked out. Then for a fraction of second there was no beat, but it returned and sped up in a normal non-tachycardial rhythm. There were smiles all around. The doctor asked if I'd noticed their concern as the heart rate dropped. I apparently hovered around 30 bpm for a few seconds before stopping. I hadn't noticed because I was focusing on getting a good breath. We then had to wait around for a while to make sure things were going well, and they cut us loose. No one wants to go through something like this, but I found the experience to be very interesting. I had no idea that doctors had such a method of resetting the heart rhythm.

On Thursday, I ended up back in the ER. In response to the tachycardia, the Phase I Clinical Trial Clinic scheduled an echocardiogram for early Thursday morning. I also had two other appointments scheduled for that morning. First I was to have my eyes measured for cataract surgery, and then a meeting with a nurse practitioner in the Phase I Clinic to go over ultrasound results. While in the waiting room for the cataract measurement, I got a call from the nurse practitioner telling me to hie myself to the ER because of a pericardial effusion—fluid in the sack surrounding my heart (pericardium) was putting pressure on my heart and needed to drained.

The doctors in the ER did another bedside electrocardiogram to verify the extent of the effusion, and scheduled me to have a pericardiocentesis which involves inserting a tube into the pericardium and draining the fluid. They drained about 10 ounces of fluid, and admitted me to the hospital for observation. The next day, I had another echocardiogram, they removed the tube, and I was released.

The cause of the pericardial effusion is unknown. The extracted fluid has been sent off for analysis, and it is likely that the effusion was caused by my mesothelioma. If that is the case and it returns, they would likely go back in and cut out a piece of the pericardium to create a drain hole to let the fluid out into the chest cavity.

All in all, it was not an uplifting week, but it was interesting. I am going to put off my cataract surgery until I've seen my cardiologist, and see if I will be removed from the clinical trial. I need the surgery, but I have too much on my plate to have it now.

David