If you are reading this for the first time and want to hear the whole story, look under "BLOG ARCHIVE" on the right. Read the oldest blog first, starting with "The Diagnosis" in January 2009 (click on it) and continuing down. The blog you see below is the most recent and you want to read it last.

Tuesday, April 26, 2011

Be Prepared

I’m learning how to live with the bag. It’s inconvenient but in some respects it’s better than the Pleurx system. We’ll see how it goes.

My biggest problem now is that I have almost no energy at all. My blood pressure is very low all the time now even after hydration which I’ve had twice over the past week. I have nausea and pain off and on. I believe it’s all a sign of disease progression

I don’t think I’ll be writing much more about medical stuff unless something significant develops. At this point all the medical care is “comfort” care, palliative care. I will continue to blog as much as possible but it is likely to be focused on my thoughts and feelings as I get closer to the end. I tell you this because some people don’t like reading about that. So if you continue with me to the end ….. be prepared.

Speaking of being prepared …. I am. I’ve had two and one half years to prepare. One of my main concerns now is making sure that other people are prepared. That’s not easy.

I’ll begin this phase with the following story.

In September 2008 I was severely overweight. I battled the weight all my life, sometimes successfully, but always ending up where I started or worse. I’m sure I was very close to having a heart attack. God intervened. He said that the only way to get me to lose the weight was to have me get sick. He basically said that I could have almost three more years to make things right in my life. That’s certainly preferable to dying immediately from a heart attack. After learning of my diagnosis and prognosis I would have been very grateful to know I’d be able to live almost three more years. Of course three years doesn’t feel too good after two and a half years are gone but that was the deal.

I can honestly say that these last years have been among the best in my life. I am truly grateful. I plan to make my remaining days just as meaningful. I hope to see as many friend and family members as will see me.

I plan to carry on.


Wednesday, April 20, 2011

A Bag of Junk

After getting the bag attached last Wednesday we had a minor problem develop by Friday. I noticed two chunks of tissue inside the bag. I wasn’t too concerned about that until the tissue lodged itself in the bag’s drainage plug and clogged it. The drainage plug is used to empty the bag as it fills up. It amazed me how this tissue could find it’s way through the tiny holes of the catheter, the narrow tubing and the entry valve into the bag but then get stuck in the drainage plug.

Anyway I could no longer empty the bag so I had to go back to the hospital. They gave me a new bag, a spare one and taught me how to flush the catheter. That was all very helpful but they should have done that from the start. The doctor looked at the tissue and said it was normal to get some. In fact he said it may be pieces of the tumor. So I asked him if we could increase the suction and try to suck all the tumors out.

Interestingly, during the first 48 hours I had the bag I was draining almost 4 liters of fluid per day. That’s an enormous amount. Since then it has decreased steadily to the point where now there has been none for more than 48 hours. Dr. Yablonsky, the interventional radiologist had said that sometimes, when the abdomen remains dry, the ascites may subside somewhat. I didn’t put too much faith in what he said because everything else I had heard or read, including from other doctors, indicated otherwise and gastroenterology was not his specialty. But maybe he was right.

Yesterday I had a routine appointment with Dr. George. I described some pains I was having and her suggestion was pain pills. Everything is palliative now. I declined. I’m not ready to knock myself out. It turns out I was dehydrated so she kept me there for hydration. That was an unexpected two and one half hour stay. I didn’t have my computer with me and my cell phone battery was all but dead so I settled in the chair for what I thought would be a boring afternoon. However Chris, a medical assistant, came over, sat down and spent a good hour chatting with me. We had never spoken to each other so much before. It turns out we have quite a bit in common. I really appreciated his time.

I had more energy after the hydration, but the pain continues. It worries me.

But for now I’ll carry on.


Thursday, April 14, 2011

Rough Days, Sunny Days

Monday I had the Pleurx catheter implanted. It was done by Dr. Yablonsky, an interventional radiologist. Everything went well including the fact that the conscious sedation kicked in at exactly the right time rendering me unconscious during the painful parts and waking up exactly when it was over. Terry and I left the hospital with me feeling quite well.

Later in the night the local anesthesia wore off and pain set in where they had made two incisions. It was bearable. By Tuesday afternoon the pain was worse but I’m accustomed to that kind of pain and knew it would pass within a few days. However a bigger was developing. Fluid was leaking from the incision where the catheter exited my abdomen. It wasn’t blood or puss or anything like that. It was the ascites fluid. The leaking got worse and worse until it was literally continuous, saturating dressing after dressing as well as my clothes. Obviously something was wrong. I called the hospital and they told me to come in Wednesday morning. It was a long night.

Wednesday AJ brought me to the hospital where we had a little fun with the woman at the registration desk. She had a little trouble with the fact that we both have the same name so she kept asking me my birth date. Dr. Yablonsky examined the incision and gave me the comforting news that he had never seen anything like this before. He brought me back into the procedure room where he looked and poked while watching on the x-ray screens. There was no anesthesia this time and he was poking and pushing pretty hard, trying to reposition the catheter and exit tubing. It hurt! He was not able to reach any definitive conclusion. He thought the problem might be that there was too much soft tissue around the tubing. I think “soft tissue” is the medical term for blubber.

Dr. Yablonsky decided to try abandoning the Pleurx method at least temporarily. He connected the tube to a bag in order to provide a continuous gravity drain. The idea is to not allow any accumulation of fluid in hopes that while dry, the “channel” that the exit tubing creates will heal and seal itself off. He told me if there was any more leakage everything would have to come out and I would be a Pleurx failure. If the leaking stops, we’ll wait at least two weeks for the channel to heal and then hope we can go back to the Pleurx. If at that point the leakage does return everything would come out. I think there’ also the possibility of continuing with the bag, an option I don’t like right now. He said we could also try implanting the catheter on the other side which to me seems questionable.

As of right now there has been no more leakage and the pain is going away. So far so good. But I hate the bag.

Then last night God sent us a consolation gift. Around midnight, Terry’s son Joe called from Arizona to give us the news of the birth of his and his wife Susan’s baby boy, Joseph Richard. What a pleasure it was to see Terry so joyous. Life goes on and new life joins in.

And one more thing ……………………

This is the tree Terry and I planted in the simmer of ‘08. This is the third spring bloom I’ve seen, at least two more than I expected. Warm weather is coming. So is the sun. I love the warm weather and the sun.

Carry on sunshine.


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Monday, April 4, 2011


As I’ve said many times, patients have to be their own advocates or, if they are unable, someone they trust must do it for them. This applies not only to the actual medical care but also to such matters as insurance coverage. Here’s a case in point.

I have made the decision to have the catheter implanted so I can drain the fluid myself. For those who are interested it’s known as a Pleurx catheter. Pleurx is the brand name. After it is implanted each drainage requires the use of a Pleurx drainage kit consisting of a drainage bottle, 3 alcohol pads, a clamp, a cap for the valve, some gauze pads and a foam pad. A case of 10 of these kits costs about $750. You gotta love it. Based on my rate of fluid accumulation I would need about 8 of these per week costing $600 per week.

Before going ahead with the procedure I wanted to make sure my insurance would cover it. I looked into it several weeks ago by calling the insurance company and was told that it is covered but that pre-authorization is required. On Thursday the hospital called and wanted to schedule the procedure for tomorrow. I told the woman that was fine with me as long as she was able to obtain the pre-authorization. She felt she would have it by today so she scheduled it. Over the weekend I pulled out the insurance contract to satisfy myself that it would be covered and exactly what had to be done. My conclusion was that yes it would be covered and yes, pre-authorization is required. Throughout the day today I spoke to the hospital and the supply company and everyone was working on the basis that pre-authorization is required. Then, at about 4:30 in the afternoon the representative from the supply company called and said “Good news! No authorization is required”. I asked her what she was basing that on and she said she had just gotten off the phone with the insurance company. I told her that person was wrong, not what she wanted to hear because she was ready to put in an order. She argued that she spoke to the company herself and had a “reference number” for the call.

I have enough experience to know that the reference numbers only indicate that you spoke to them, it has nothing to do with their obligation to pay. I pointed that out to her and her reply was that conversation was all she had to go by. As politely as my waning patience would allow, I reminded her that was not all she had to go by. I told her that I had spoken to them twice, her own company spoke to them prior to this, and I myself reached the same conclusion after reading the policy. That’s 4 sources that said authorization is required, 1 that said it’s not. Do you think that 1 may be wrong? She agreed to call them again.

Shortly after that the hospital called, happy to have heard from the supply company that no authorization is required and ready to go tomorrow. Again very politely, I told her no, they needed to get this straightened out and rescheduled to procedure. Shortly after that the supply company called to say I was right, authorization is required and they would be faxing over the necessary paper work. Had I proceeded without it I would have been stuck paying for at least the first round of supplies. Dopes.

I should be having the procedure later this week. I decided to do it because although I seem to be able to have the fluid drained every eight days, the sixth and seventh days are very uncomfortable. So I’m useless three out of every eight days. I hope to be more comfortable more often when I can drain myself. It’s only palliative but that’s all I have now.

In general I’ve been feeling better since I’ve been off chemo for a while. I don’t like the fact that there’s nothing fighting the cancer now but it is what it is.

Carry on.


Friday, April 1, 2011

For Patients

As an EC patient who used the internet extensively to learn as much as I could about my disease I wanted to make sure I passed on as much useful information to other patients as I can. There are a few things that come to mind now.

First of all, don't be discouraged by the results or side effects of initial chemo treatments. There are numerous ways to deal with the side effects. Talk to your doctor. S/he will probably have a remedy. If you don't get positive results from the first chemo regimen don't give up. There are others out there. Realistically, this disease usually cannot be beaten by chemo alone. Surgery is probably your best chance if you are in early stages. But chemo can buy you time. It can be precious time. And who knows, it may be enough time for science to find a cure.

The biggest disappointment to me was the Sir Spheres. I expected that treatment to put an end to the liver tumors. It did not. In fact I think it is the liver tumors will  ultimately kill me.

The biggest surprise to me has been the ascites. I've read a lot about this disease and about other patients and had never heard of this happening. It has been the most difficult symptom to deal with. Since I've had it I actually met another EC patient who suffers from it. He happens to live about two miles from me and goes to the same oncologist. But when I first started to be affected by it I didn't know anything about it. Unfortunately, the more I learn about it and the longer I have it the less I like it. It is usually a sign of disease progression. It usually never resolves. It is extremely uncomfortable. It sucks.

Fight as hard as you can and as long as you can while still maintaining a decent quality of life. We are blessed to be given the time and the inspiration to try to mend parts of our lives that need mending. But when the time comes it is because God wants you by His side. And there is no better calling.

Every patient is different. Your journey will be unlike all others. Wherever that journey takes you, whatever you encounter along the way........

Carry on.