The Day My Energy Returned

For the first several months after completing the ribavirin and interferon standard therapy I still had a  very low energy level. It wasn't exactly exhaustion but it was a situation wherein if I did anything more than normal exertion it would wear me out and I would need to take a nap or at least sit down and rest. On a normal workday, I would work seven or eight hours go home and not be able to do anything in the evening unless I took a nap after work. If it were a particularly hard day at work I wouldn't really have the energy to do anything whether or not I rested after I got home. This gradually improved as the months went by but there was no breakthrough, there was no point when I felt that my energy level had returned to normal. It was just a holding pattern with very gradual improvement.

This continued until about mid-March of this year. At that point, almost 9 months to the day when I had finished treatment, it felt as though a switch was thrown and suddenly I had my energy back. I could move faster, I had a bit more strength, but more importantly I was not exhausted by doing basic physical activities. I'm not sure why this occurred when it did. Other people who have been through treatment have told me that you have to completely ignore the time frames that the medical professionals give you for recovering from treatment. Most of the literature indicates one to 3 months, some say 3 to 6 months. People who have gone through treatment that I have talked to state almost unanimously that you will not get back to normal until the same number of months have passed from the end of treatment that you spent in treatment itself. I was in treatment for 18 months and the amount of time passing before I began to feel a genuine return of energy or and w approximation of the way I felt before treatment began was nine months, so perhaps there is a correlation where one month of recovery for every two months of treatment will eventually return you to at least a semblance of your previous state. Whatever the case, I don't have a specific reason related to the treatment that would indicate to me why suddenly I began to feel better.

I still have a long way to go. I feel tired after levels of exertion that would not have tired me nearly as much before the treatment began. I also still feel some cognitive and memory deficits that I truly hope will go away as more time passes from the end of treatment. I still hold out the faint hope that my thyroid gland may eventually recover some of its function. At this point, being able to do what I can now is a wonderful thing.

I suspect the change may have had something to do with the time of year if nothing else. I began to feel better around the beginning of spring and two things happen around that time. Daylight savings time starts, and the weather begins to dry out and get warmer. The combination of the sun not setting a 5:30 p.m. and better weather no doubt did a great deal to energize my body and my mind. I don't think it's a complete explanation, but it must have had an effect. Another thing that happens at that time of year is that spring training for the baseball season is coming to a climax and the start of the  regular season is just a few weeks away. I have loved baseball since I was a boy and I'm sure that the excitement of the upcoming season must have given me some energy as well. My fantasy baseball draft was only a few weeks away and that always sharpens the concentration and brings on the energy.

So who knows. perhaps it was not some set period of months after the end of treatment that triggered the renewal of my energy but instead was simply a combination of longer days warmer days and the start of baseball season. Whatever reason or combination of reasons it was I'll take it. I was so tired of being tired, so tired of being somewhat depressed and so tired of having my muscles feel sore and weak that whatever the reason it's good enough for me.

Speed Bump On The Road Back

Just in case I didn’t get the memo that it was going to be a long slow road back to full mental functioning, there was a reminder for me this morning. We had ordered a Chicago-style pizza for dinner last night and, as expected, there were leftover slices after we gorged ourselves. The plan was to take one of these massive wedges of dough and cheese to work for lunch. A good plan: easy, quick and needing minimal effort in the morning to prepare. Things did not quite work out that way.

I got up, did my stretching, drank my green tea (this is California after all) and took out the container with the pizza and set it on the counter. After a quick bathroom break, I returned to the kitchen and realized lunch still needed to be made. After moving aside an annoying plastic container, I laid out bread, cheese, roast beef, tomato and lettuce. Just at the point of finishing the sandwich and putting it into the waxed paper bag, I looked down and saw the pizza sitting right there on the counter were it had lain, forgotten (indeed, even shoved aside) during the process of making the sandwich. It turns out that my brain is just as capable of being distracted and forgetful 4 weeks after finishing treatment as it was during the height of treatment. You could say that there is nothing like the feeling of foolishness that accompanies this sort of brain lock, but I have felt it so many times during the past many months that it has become all too familiar. Here’s hoping that the brain fog starts to burn off in the near future.

The silver lining was that the pizza was just as good for dinner as it would have been for lunch.

A Creeping Sense of Dread

Holiday Stress Equals Erratic Meds


I’ve been in treatment for 57 weeks and have been negative since the end of September, but I am approaching my upcoming viral load test with a great deal of trepidation. The month since the last test has been very difficult. The holidays were not a happy time for my wife and I as there were job problems, family problems and the general high stress levels that the holidays can bring.

The combination of all the stress with my growing inability to concentrate and remember resulted in my missing 3 afternoon doses of my meds during the 10 day period following Christmas. This makes me very edgy as it was the combination of skipped interferon and lowered Ribavirin doses that led to the viral breakthrough that bounced me out of the RO5024048, RG7128 study last June.

In this case, I did not miss any interferon doses, but I did miss 3 partial doses of Ribavirin in a relatively short period of time. This was effectively similar to the lowered Ribavirin doses of late May before the breakthrough. Ribavirin by itself does not seem to have a strong direct antiviral effect on the Hep C virus, but it does contribute a great deal to continuing to hold the virus in check once the interferon has pounded it into undetectability. Therefore reducing the dose, whether deliberately or through simply forgetting to take the drug, can have a significant negative effect on continuing to be undetectable.

The strange thing is that I cannot remember forgetting to take two of the doses (I realize how silly that sounds given the state of my brain by this point but nonetheless…). I can only remember the sick feeling of getting up the next morning, going to take my meds and finding the closed container labeled Monday p.m. that still contained my previous evenings dose. It was bad enough the first time, but two days later on Thursday, exactly the same thing happened. I thought I had done my duty, got up the next morning and found the container with the dose on the table. I knew that it was serious, that I had to stay on schedule and yet I had forgotten again. The thing that knots your stomach is the knowledge that you have screwed up and you can’t go back and make it right. The opportunity to stay on the schedule is gone and the best you can hope for is that it hasn’t compromised your treatment.

Several days later, I missed the third evening dose. This time I figured out what happened and decided that yet another behavior modification was necessary. I went to take my evening dose, sat down and opened the container with the meds in it and then my cell phone rang. It was someone to whom I rent space in my studio so I took the call. It took a while to figure out the problem and by that time I had forgotten to take the dose. However, since I had specifically gone into the room to TAKE the dose, when I thought about it later that evening, I confabulated the memory of actually taking the meds. Again, the increasingly sick feeling in the morning when I found the open but full container on the table. I decided at that point that I would immediately take my doses the moment I thought of them from that point on and it has worked excellently since then. It doesn’t matter if the phone rings, my wife is talking to me or I have to run to the bathroom; when the thought of my evening dose crosses my mind, I get up right then and go take it.

I cannot stress enough the importance of keeping your dosing schedule (your doctors, nurses and everyone else all stress the same thing, so I know I am preaching to the choir). If you have to put signs all over your home, rubber bands on your wrist or tattoo it to your forehead; do whatever it takes to stay on your schedule and not miss a dose.

I hope it doesn’t screw me up, but it was a bad end to last year and a tough start to this one, so I am looking at this test the same way you look at the door into the dark basement in the horror movie – don’t go down there and don’t split up.

Memory Deficit Side Effects May Be Permanent

There was a guy I knew years ago who had the talent of entering a conversation about almost any subject with the line, “let me tell you a story about that.” Strangely enough, the story was relevant to the subject an uncanny amount of the time. I don’t have that same talent, but that won’t stop me from starting off with a story.

The day that I got the news that my viral load was undetectable or “negative” in the parlance of the hepatology folks, I wrote an entry about the motivation that gave me to pay special attention to my drug dosing regimen so as to give myself the best chance to succeed at having a sustained viral response at the end of treatment. Motivated though I was, I forgot both my evening Ribavirin dose and my evening injection of interferon on that very day. This was not disastrous as I had already taken 600 mg of ribavirin in the morning and I was able to give myself the interferon the following day. Nonetheless, it shows the power that interferon brain fog has to confuse even in the face of sincere dedication.

The following week I had my regular appointment with my hepatologist Dr. Bzowej. We discussed my test results, my general state of health and how I was reacting to the medications I was taking. I went over the various physical reactions I was having to the drugs and how those reactions had changed over time. She then quizzed me about my mental state. I told her that my memory had deteriorated quite a bit over the course of treatment and that my ability to concentrate and solve problems had also taken a hit. These are expected side effects of the interferon and ribavirin drug combination, but Dr. Bzowej had some new information about them that is quite disturbing.

The memory and cognitive deficits that Hep C treatment inflicts on those who are undertaking it have been believed to be temporary. When the patient stops taking the drugs, those side effects gradually disappeared and the patient returned to the same mental acuity they had before treatment began. This is apparently not always the case. Dr. Bzowej related that in the past year, she has had two patients whose symptoms have not improved. Their memory and concentration problems have remained over a year after no longer taking interferon and ribavirin. She is concerned enough that she referred me to a neuro-psychology specialist for a set of tests to determine my current memory and cognitive abilities. She will then have me tested in anther 3 months to check whether there has been further deterioration and if so, what course of action we should take.

This scares the crap out of me. The one thing I have always been able to rely on is my brain. I have neither dazzling good looks nor great athletic ability or physical strength. I have some amount of personal charm, but certainly not enough to depend on for a living. Nor do I have vast amounts of physical or moral courage. What I do have is a good brain. I have intelligence, creativity, the ability to learn new skills relatively quickly and the ability to solve problems. This has always been the rock I could depend on, and if it crumbles, I don’t know where it leaves me. A pile of sand on the beach maybe; certainly it changes who I am and what I can do.

The same applies to anyone else considering entering treatment. Talk to your hepatologist about this issue. Ask if it is possible to be tested for memory and cognitive function before treatment begins to establish a baseline for future reference. While in treatment keep your doctor informed of the symptoms of memory and concentration loss. You have to decide if being cleared of the Hep C virus is worth the small possibility of permanent brain function damage.

I’m still glad I entered the study and am now in standard treatment, but I don’t want the price to be permanent memory disability no matter how small the chances of that happening.