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.

The Magic Bullet Theory

Waiting for the “Next Best Thing”


Last Tuesday was the annual Holiday Pot Luck for the twice-monthly Hepatitis C support group that meets in the California Pacific Medical Center Pathology Conference room. There were about two dozen people there and, in the tradition of potluck dinners everywhere, enough food for twice that number. Best of all, there were plenty of desserts.

Of the two dozen people or so people attending, about half were either currently in treatment or had successfully completed treatment; another quarter had undergone treatment and either failed to respond or the virus had reappeared after the completion of treatment and the last quarter had yet to make a decision about treatment. About half the folks who had successfully completed treatment and never had a recurrence of the virus were people with Hepatitis C genotype 2. This genotype has about an 80% chance of clearance, and excellent prospects of a sustained viral response, with 24 weeks of standard interferon and ribavirin treatment.

After people had settled down with their plates of food and glasses of non-alcoholic libations (ginger potions of all sorts were quite popular), everyone reported on their general state of health, how they felt and any significant issues they had that might be caused or intensified by the disease or their treatment status. Several common themes emerged as people told their stories.

The people who had successfully completed treatment reported that by and large they felt they were back to normal functioning (one individual reported that she felt that after 2 years she still did not feel she was back to her previous cognitive function level). They felt their energy had returned, they no longer had shortness of breath, their strength was back and generally they were physically in good condition. Most felt that their mental faculties and their memory had returned to pre-treatment levels as well. To a person, they reported that it took considerably longer to return to full function than the time that is considered standard by the medical establishment. The usually quoted time to recover from the effects of interferon, ribavirin and the other associated drugs used in treatment is 3 to 6 months. Everyone reported that the time it took them to recover from treatment was in the range of 6 months to 1 year with a few reporting longer times than that.

The people currently in treatment (and for that matter, the folks who had completed treatment) reported two side effects as most debilitating: fatigue and brain fog. The fatigue ranged from merely difficult to extreme with no one reporting only mild fatigue. That said, person after person stated that the most irritating and frustrating side effect was the cognitive deficit associated with interferon brain fog. It was not just the increased memory difficulties, it was the inability to concentrate, the ease of distraction, the loss of train of thought that drove everyone crazy. Most folks also reported nausea of varying degrees, insomnia, sweats etc.; but those paled in comparison to the frustration of brain fog and the annoyance of being tired all the time.

The rest of the people at the meeting, the non-responders to treatment and the people yet to attempt treatment, all had the same outlook: they were waiting for the new and better drugs to become available. They had very different reasons for this viewpoint, but it was surprising to see the uniformity of their point of view.

The non-responders and fail-to-sustainers had all failed at the standard interferon and ribavirin treatment. They and their doctors had come to the conclusion that the two drug standard treatment was not going to successfully defeat the virus in their bodies. They need the additional punch of one of the new drugs in order to have a real chance at success. You can’t argue with that conclusion, when what is available has failed, you have to await further developments to move forward.

The people who had not done any treatment had different reasons for waiting for the next new and better drugs. Many were afraid of the side effects but most were looking for a therapy with a better chance of success that the standard therapy. The standard treatment has about an 80% chance of clearing genotype 2 Hepatitis C. It has a 40-45% chance to clear genotype 1 Hepatitis C. The drug most likely to be approved next is Telaprevir, a protease inhibitor (Boceprevir, a similar protease inhibitor is supposedly not far behind). Telaprevir has demonstrated in research testing that, in combination with interferon and ribavirin, it has a genotype 1 clearance rate of about 60-65% (Boceprevir has similar test results). On the surface the reasons for waiting for the new drugs are clear-cut, 60% is a much better chance than 40%. There are a lot of other factors to consider before pinning one’s hopes on the next best thing, however.

First is the discovery of variations in the IL28B gene and how these variations affect response to treatment. If you have the CC variant of the gene, the evidence indicates that your chances of responding well to standard treatment rise to the 60% level, or about the same as the telaprevir response rates. The test to determine which variant you have is available, not extremely expensive and clearly gives information you can use to make a decision about treatment. For a more info the link is here.

Secondly, the new drugs are not assured of either approval or timeliness. The latest Telaprevir application was submitted to the FDA in November, 2010 which means a decision is 6 to 10 months away. Boceprevir has not even reached the “it’s coming in the next x months stage of rumor yet.” There is also the, admittedly small, chance that Telaprevir is never approved. I have many friends who are in the gene-splicing and drug development fields who report a number of instances when companies were extremely confident of FDA approval only to be turned down during the final application. The FDA might come back with concerns that require further testing or additional data submissions, all of which could move the timeline much further out. The promising new polymerase inhibitors (RG7128 and RO5024048 for example) are only just beginning phase II trials which means they are at least 3-5 years away from any sort of approval and only if they succeed in further trials. There are other drugs even further away, etc.

Thirdly, these new drugs are expensive. They project to be about twice as expensive as the current interferon and ribavirin. The plan is that you only need 24 weeks of treatment, but it will be a very expensive 24 weeks. Therefore the question of once the drugs are approved how long it will take for them to be added to insurance company drug formularies so they will be covered by your insurance becomes extremely important. As we all know, insurance companies can be quite recalcitrant about approving new therapies.

Finally, there are all the considerations about your personal situation. What stage is your liver disease? What is your viral load? What is your general health? How old are you? These questions only start to list your issues. What is your financial situation? What is your insurance coverage? What is your work situation? Do you have solid family support? If you have to go on disability, how would that affect your job future? Can you even tell your employer, family, friends and coworkers that you have the disease? All of these and more are considerations that may be more important than the rates of viral response of the various drugs.

Remember two things as think about all the ramifications of when and how to deal with your Hepatitis C: first, there is always a newer, shinier, more promising therapy in the future and second, the best is the enemy of the good.

Personal Evidence of Cognitive Deficits from Hepatitis C Treatment

I am writing this piece having finally managed to tear myself away from the television after watching almost 90 minutes of the Adam Sandler vehicle “You Don’t Mess With The Zohan.” If that is not evidence enough that 46 weeks of treatment have eroded my mental capacities, let me add this nugget: I had to get up, go downstairs, turn the television on and check the listings to remember the name of the movie. Having walked away from the TV not 3 minutes earlier, I could only remember that the movie had the word Zohan in the title but could not recall the complete title.

In the past 6 months of treatment, my critical capacities have deteriorated to the point that I have descended from watching “Celebrity Rehab” through “Jersey Shore” and “Basketball Wives” and now am watching, and more embarrassingly being entertained by, Adam Sandler movies. I have 26 weeks to go in my Hep C chemo regimen, what will I be watching by next June, “Jackass 7, Stupid Geezers in 3D”?

The sad part is that I cannot help myself and neither it seems, can other Hep C chemo veterans. Almost everyone I have talked to about their treatment has admitted that the same thing happened to them. The lucky ones were finally so tired and concentrationally challenged they could not even muster the energy to pay attention to television and just sat staring into space. I suspect that would be preferable to Rob Schneider, Johnny Knoxville, Dane Cook or whatever else might be passing in front of my eyeballs by the end of this.

It is disconcerting to think that this result has a tiny chance of remaining permanent. While I might end up being perfectly happy as a drooling idiot for the rest of my life, I suspect my wife would find that less charming.

But, looking on the bright side, when I finally stop the interferon I can document in painful detail the increase in brain function, the gradual increase in my boredom threshold and the return of my memory. Given that I’ll be approaching 60 by the time I fully recover from all this, I wonder how I will be able to tell if my memory is back or not…

I admit that all of this is anecdotal evidence from a small set of treatment-experienced individuals and does not attain the level of statistical validity, but it is nonetheless disturbing. I’m not sure what would happen if I started to bug my wife to come with me to the latest Adam Sandler classic on opening night.

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.

The End Of The Season – Baseball, That Is.

Fantasy Team Disappoints, Actual Baseball Exhilarates


The Vincent Black Shadows, a fantasy baseball franchise operated by your correspondent for the past 25 years in five different fantasy leagues in three different cities in two different time zones, are limping to a sixth place finish in the Tri-Tip League of Santa Barbara. It was a year that saw the team crippled by injuries, players traded out of the National League and players underachieving due to sloth, pigheadedness and the insistence of playing while injured.

The Shadows pitching staff was particularly disappointing. Young pitchers failed to develop (Paul Maholm, Chris Volstad). Veterans regressed (Aaron Harang, David Bush). Speculative signings failed to pan out (Sean Gallagher, Sammy Gervacio).

The position player side of the roster entered the season weak in power hitting. My plan to leverage my excellent farm system (Starlin Castro, Jose Tabata, Devaris Gordon) as trade bait to acquire sluggers from other teams was scotched by the unexpected early promotions of Castro and Tabata to the big leagues. Adding to my loss of trade leverage were injuries to two key players (John Baker, Mark DeRosa) and the trade to the American League of another (Conor Jackson) leaving my team with holes I could not fill.

Even with this bad luck, I was still in the hunt until late July. I was unable to negotiate the needed trades however, and even my prescient signing of new Milwaukee closer John Axford and the late season additions of Kevin Corriea and Joe Blanton could not generate the necessary momentum for a run at the money. The foundation for next year’s team is very solid, but it is cold comfort indeed here at the tail end of my third year in a row finishing out of the money.

I like to think that the brain fog produced by Hep C and interferon contributed to the Shadow’s disappointing season by impairing the decisions made by the team’s “baseball people.” In fact, now that I think of it, I went symptomatic right about the time that the Shadow’s began their decline…

Major League baseball, on the other hand, has been a delight. My old home team, the Twins are in the playoffs, the Texas Rangers managed by one of my favorite people in baseball, Ron Washington are in the playoffs and Your San Francisco Giants, with a win tonight against the Padres, will win the National League Western Division Championship. The postseason is almost upon us and I have several rooting interests and a friend who has scrambled around and secured tickets.

I am optimistically awaiting my latest viral load results, and the Giant’s game is starting up on the TV and life is good enough for now…

Brain Fog x Fatigue = Say What?

The longer one takes interferon, the more significant the cognitive and memory deficits become. It’s a gradual process whose creeping nature means that you some definite “oh crap,” moments can pop up and catch you unawares. The farther into a task you go in any one day, the more like you are to be hit with a OC moment.

The organization I work for puts on a big used book sale every year. Picture a large airplane hanger with 550 banquet tables and 400,000 books open for sale for 5 days to a total of 12,000 customers. This requires some high level organization to pull off successfully, which is why the people who know us are annually astonished that we can do it.

It also means an early start the first day to make sure the logistics are all mapped out (literally) before the army of volunteers and the truckloads of tables and books start to arrive. I was there at 6:30 a.m. to mark out the floor of the hangar for table and book placement. This involves chalk, long tape measures and lots of walking; as in 20 trips up and down the 600 foot building and lots of side-to-side walking, and conferences, and rechecking, etc. By about 10:00 a.m, my dogs were barking and my brain was fogging. I noticed that I was having trouble reading my map and making calculations on my tape measure. I had to mark a 48-foot length of tables on the floor and I was standing at the 59 foot mark on my tape measure. I could not for the life of my figure out that 59 plus 48 equals 107 feet. I made enough wrong marks on the floor (which I did a bad job of scuffing out) that the volunteers had to track me down and make me show them where the damn tables were supposed to go. Suddenly, I just couldn’t think clearly. Taking a break helped a bit as did water, a snack and periodic rests, but once the brain fog started, the rest of the day was not a good one for our hero.

Twelve hours of sleep helped, but another long day the next day meant that I needed another ten hours of sleep today, a three hour nap in the afternoon and restricting myself to menial tasks around the house. Ten hours more tonight and I should be ready to exhaust myself again tomorrow.

Of course I will be most aware of my situation and be extra careful to rest adequately and not overextend myself in stressful situations, of course…

Fatigue Vs. Normal Life

One of the situations that develop after an extended period of Hepatitis C treatment is the onset of a pervasive fatigue. It is not that you feel tired all the time, it is that your ability to bounce back after exertion becomes much more problematic. This reduced level of recuperation can also extend for several days after the event that brings it on. If you combine that effect with the fact that brain fog makes you forget you have this recovery deficit, it creates for some bouts of exhaustion that can take you completely by surprise.

This sort of fatigue is one of the most widely reported effects of long-term treatment on interferon. The drug seems to eventually saturate your cells at some level and large numbers of patients report effects ranging from extra tiredness at the end of the day, to barely being able to get themselves out of bed without exhaustion.

Several recent examples in my own case come to mind as illustrations of this effect. A few weeks ago I took a week vacation from work. I did not travel anywhere as my wife was working during my time off. I caught up on my sleep, my reading and did one project around the house that had been on my mind for about 10 years. (This is the nature of home ownership, after you do you initial renovations – in our case very extensive – you tend to let the small items slide until you just can’t stand it anymore). Our house has lath and plaster walls that are cracked in several areas and I made it my project to fix cracks in the entryway and stairwell. The first day took about 7 hours of scraping, filling vacuuming and cleaning. I was tired the next day, but it didn’t seem bad. It took about 4 hours that day to finish up and after cleaning and replacing rugs, etc. I felt good about getting the job done, finally. The following day I slept till noon, woke up tired, lasted till about 2 p.m., slept till 5 p.m., was able to stay up and visit with my wife and then was in bed at 10 p.m. and slept till 10 a.m. I was exhausted from the two days of physical activity that had gone before.

A few days after that I went to the baseball game referenced in this post. It was a long game, in mid-week and I followed it up by working the next day. The day after that, I again slept till noon, did a bit of reading and went to bed early in the evening. The mere fact of dropping a 10-hour day (which was primarily recreation) into the middle of the work week flattened me.

The final example occurred last week when I work five straight days instead of my usual four. This didn’t seem like a big deal to me and indeed on off day of Friday, I did not feel terribly tired. Saturday I went to a reunion of a group of folks I have know for over 20 years who used to take long weekends together in the California gold country. It was a relaxing day of eating, talking and sitting around on the deck. The addition of these 5 or 6 hours of excitement and attention to the extra-long work week left me out on my feet the next day. I found myself dozing off reading the paper; riding in the car and just about any time I sat down to take a break from our not-very-strenuous walk.

In each of these cases, I had completely forgotten the previous bout of exhaustion by the time the next one came on. If I had enough energy to remember the fatigue or enough memory to remember the lack of energy, it would make planning my exertions go much smoother…

Normal Life vs. The Brain Fog

The single most difficult aspect of Hepatitis C as a disease and of the treatment for Hep C is the combination of memory loss, concentration loss and cognitive loss known as brain fog. Hep C sufferers consistently comment that it is the most troubling and hard to handle aspect of the disease. Hep C itself has a side effect in many of its victims of varying forms of memory and thinking difficulties and when you combine the effects of the Hep C virus with the side effects of taking interferon you get the syndrome they call interferon brain fog. It affects all aspects of your life to one degree or another.

It goes beyond merely forgetting where your keys are or what the name of a movie you saw in the past is. It extends to trying to remember what you walked into the room to do, what it is you were trying to say a moment ago, what you were going to make absolutely sure you got done today or even what you sat down to write about. Perhaps the most troubling aspect of brain fog is that it can actually make you forget the fact you have brain fog, a classic lose-lose situation.

You forget that you have noticed very particular situations that you made note of in the past with an eye towards either avoiding in the future or not entering in to without a plan to make the situation go as smoothly as possible. You find yourself unable to concentrate even though you know you are in a situation that absolutely requires that you pay attention. You discover that you cannot think through and solve the type of problem that you have been able to handle in the past. It drives you to distraction and, unfortunately, you are already there.

This past week my wife and I went to the Roots of Impressionism exhibition at the DeYoung Museum in San Francisco. In the preparations to go to the show, it completely slipped my mind that since the beginning of my treatment crowd situations make me anxious and irritable. The show was only moderately crowded but shortly after entering the galleries, I realized two things: I was starting to get really jumpy and I had forgotten to bring along my Ativan which does a very good job of calming me down in those situations. By the time we finished our tour of the exhibition I was edgy enough that when some friends we had happened upon at the show suggested going to the café for a chat, I had to decline and head home to calm down.

As an aside, I think that the person who invented the audio tour for art exhibitions should be tarred and feathered. Bad enough in the normal sort of exhibition that you have to navigate around the clumps of people reading the labels and the explanatory posters, but at least their ebbs and flows are predictable. The people walking around with audio headsets on are a nightmare. They stop and start erratically. They make sudden turns and movements and they are completely unaware of the people around them. It is the same sort of behavior as automobile drivers on cell phones and just as much of a pain in the ass.

Returning to our previously scheduled disquisition…

Two days after the jaunt to the museum, a friend who had an extra ticket invited me to a Giants baseball game. I laid out a checklist for the game that included sunscreen and a long sleeve shirt to counteract the extra sensitivity to sunlight caused by interferon; several bottles of water, some fruit, and an extra T-shirt in case the fog came in and dropped the temperature 20 degrees. I forgot entirely that baseball games draw large crowds, especially on beautiful summer afternoons. The mere act of getting through the crowd to get to my, excellent, seat already had me twitching. I had once again forgotten to bring the Ativan that allows me to handle crowds more easily. The only thing that saved the day was that the people immediately on either side of our seats decided not to attend that day and there was enough extra personal space to let me relax. It was a great game, even though the Giants lost, but it could have been a really tough day.

You would think that the dodgy experience I had at the museum only 48 hours earlier would have left an indelible mark, but even that could not penetrate the fog…

The Little Things…

Slogging ones way through the cycle of treatment, you really do start to appreciate little things. You have to let go of the level of activity and accomplishment you had before the relentless round of powerful drugs began. It’s either that or drive yourself crazy with frustration and depression. On the other hand, you can begin to appreciate as accomplishments things you either took for granted or viewed as things to get out of the way in the past; for instance: housecleaning.

My wife is the beneficiary of this newfound appreciation of accomplishing small tasks. The house has been a bit cleaner, in some rooms anyway, than it was before I started treatment. Weekends usually find me in the headache, backache, nausea, fatigue, and muscle weakness phase of my injection cycle. This generally means that I don’t get out and do much outside the house on at least one of the weekend days. But I can clean the bathrooms, or degrease the stove, clean the grout, you know, all the delightful tasks that you generally find any excuse to avoid. When you spend the day really getting some part of your environment clean, it makes you feel better. You’ve done something good for yourself and your family. It may not be much, but it does have the feel of accomplishment. And there is always the benefit of having your wife say, “Honey, did you clean the cooktop? It looks like new.” As any married guy knows, a happy wife makes for a happy husband.

Reorganizing is another manageable task that can give you a sense of progress. Over the past several weeks, I have opened cupboards, ventured into closets and examined boxes that have not been opened, ventured into or examined in months (okay years, but that might be revealing too much…). It is amazing how much room you can create just buy arranging things in a logical way instead of the “throw it in and close the door before it can escape” method. The archaeological finds you can make in the back of your closets are quite amazing as well. When did you wear those shoes, where did that shirt come from and I don’t remember that photo at all are the sorts of reactions you can expect. There is nothing like the joy your wife expresses when she discovers that there is now additional room in the closet for more stuff!

After a day of cleaning, reorganizing, weeding, or some other task, there is also the joy of flopping down in front of the TV and discovering that the movie “Juno” just started and you can recover while enjoying a great flick. Small movie, but huge enjoyment.

Another thing I have had to learn to accept and let slide is the effect brain fog has on my ability to write. It’s not hard to sit at the computer and write; I have the energy to do that. It is the frustration of sitting in front of the screen while trying to remember where I was going with a particular story or experience. Combine that with not be able to remember the words for certain thoughts, actions, feelings and even places and things and it really drove me crazy. Now I just sit here and let it slide. It’s still annoying, but the flip side is that I can genuinely say to people, “I have no idea,” or “I don’t remember that at all” in all sorts of situations. Gets you off the hook when your blank look of incomprehension is clearly real.

I would the mindset resembles the one touted in the AA serenity prayer. Unfortunately there is no chance that I will have the wisdom to know the difference…

World Cup Manifesto

We take a break tonight from our regularly scheduled disease-ridden maunderings to discuss the most important event occurring in the world today, the 2010 World Cup of Football (or soccer to most US citizens). And we dare to ask the question, “Why is this World Cup so disappointing to the world-wide television audience?”

We are not talking about the football. The play has been interesting and even compelling for the most part. Both of the finalists from 2006, France and Italy, did not make it out of their groups. Combine them with England (also a casualty of group play) and all three looked old, slow and as if the game had passed them by. The upstart nations of Asia displayed quality play and two advanced to the knock-out round. South America reasserted its historic dominance and had the highest percentage of its entries make it clear of group play. Africa fell prey to disorganization and bad luck and sees only one team still alive in the tournament. The USA did as well as it should have winning clear of its group only to go down in defeat in the round of 16. There has been interesting attacking play, the usual number of terrible mistakes by players, refereeing both wonderful and woeful, and a fast-brewing controversy about the intransigence of FIFA regarding the role of instant-replay in international football.

All well and good, but when we are standing amongst a group of strangers in a tavern at 7:00 a.m. on the west coast of the USA, many of whom clearly came directly from their bed without a hygiene stop along the way, we want more than mere great football on the big screen as our reward.

We want cheesecake (and beefcake too for that matter).

What are we getting instead are endless shots of coaches pacing the sidelines, players grimacing after tackles and missed shots and the occasional celebrity fan close-up. Does anyone alive today honestly believe that we want to see a wrinkly Bill Clinton standing next to an even wrinklier Mick Jagger (who is beginning to look like he goes to the same life extension center for the undead as Keith Richard)? Hell No! We want to see beautiful Spanish women agonizing over a missed goal opportunity. We want to see muscular Ghanaian guys with six-pack abs waving their shirts over their head. We want to see bronzed Brazilian babes doing the samba after the best team in the world scores yet another goal. In order to prevent this travesty of television justice from ever happening again at the World Cup, two major areas of concern must be addressed in the most forceful terms.

The first is that the World Cup must never again be scheduled to occur in a country that has cold, or even cool, weather at world cup time. Beautiful young women and cute young guys are still beautiful and cute even when bundled into down jackets and knit beanies, but if that is what we want to see we can tune into the winter X-Games on ESPN. In warm-weather venues we can see the most beautiful men and women in the world in all their skimpily-attired glory. We can see them in the extremes of the agony and ecstasy that sports fans can experience and for this World Cup we could be seeing them in High Definition TV. Instead we see only the faces of the beautiful and handsome peeking out from beneath their wool hats and over the collars of the jackets they are huddling inside. Never Again!

The second is that any television director who allows a stoppage of play to go by without either a beefcake or cheesecake shot should be dismissed from directing the video of any further world cup matches. We are not talking about an out-of-bounds ball that results in a relatively quick throw-in or a foul that allows for a quick replay followed by the free kick, these may continue to be covered in the same way. But when a player is writhing endlessly around on the ground after a trivial foul, or a player is strolling slowly over to the sideline to be replaced or we are enduring the agonizingly exact preparations for a set piece off a free kick, we must be given beauty as a reward. Above all, we must be shown the celebrations in the stands after a team scores a goal. As it is now, we see the players celebrating the goal. Watching yet another striker run to the corner flag, slide on his knees and be mobbed by his teammates without also being shown young women shrieking in joy and young men dancing in the aisles and the celebration of fans who have followed their country’s teams longer than that striker has been alive must never be allowed to happen again. If FIFA will not address this, we need a new international governing body.

Here it is: The Heprat Manifesto for the perfect World Cup:

Warm Weather Venues and Compulsory Cheesecake.

How I told my Wife I had Hepatitis C

I learned that I had Hep C on Friday, October 31st, 2008, Halloween. I told my wife about the diagnosis 3 days later on Sunday, November 2nd, the Day of the Dead. That was not intended by me to be significant, it was just that I felt I had to tell her by the end of the weekend and the days just happened to match.

It took me that long to tell her for two reasons. I had to learn more about the disease and the effect it would be having on our lives and needed the time to do some research. I also couldn’t tell her earlier because Halloween is one of her all time favorite holidays. She loves the costumes, the parties, the marathon showings of cheap horror and terror movies at theaters and on TV. For many years we lived in the Castro district of San Francisco which is legendary for its Halloween celebration and we always went down to be in the middle of the celebration. So it was not as though I could just dump my news on her on the day itself. After all Hep C is not a fast-moving disease and 48 more hours before the bomb got dropped was not going to make any difference.

We went out to Golden Gate Park in the afternoon and stopped off at the art museum, looked at the show (I have no idea what we saw as I don’t remember much about the day other than our conversation), had some lunch and then I told my wife that I needed to talk to her about something important. I know that made her nervous, as we do not generally have specific conversations about “important” events or about the nuts and bolts of our relationship. Those sorts of conversations tend to come up within our day-to-day life and don’t usually need to be specified as something important. So as we walked over to a park bench, both of us were anxious (I know I was anyway) about what was coming.

I actually had two things to tell her. The one I led off with was that I had screwed up the computer by catching a virus and was going to have to take a day to clean and possibly reinstall some stuff and that she shouldn’t plan any projects that would use it for a couple days until I could get that done. She was a little disgusted with that news and ground me a bit for being careless, but then I told her I had something more important to talk about.

I told her that I had gotten a call from doctor K and that he had told me that I had Hepatitis C. He said that he had tested me for Hep C because he noticed in a previous test that my liver enzymes were elevated and had made a note to test for Hep C the next time I had an appointment. I told her that it was a long-term illness and that it didn’t mean that my health was going to be affected in a seriously negative way anytime soon. I also asked her to make an appointment and get herself tested as soon as possible so we knew whether she had it or not. I told her I had a follow up appointment the next week to go over the results with doctor K.

She was stunned. She immediately asked me a bunch of questions about Hep C. How was it passed from one person to the next? What was the timeline of the disease? What were the symptoms and was I suffering from them? How long had I had it? Did I know how I had gotten it? How was it treated?
I told it was a blood-borne disease, that it was not passed in other ways. There was some possibility of transfer by sexual intercourse but it was not clear if that was because of transfer via sexual fluids or because of blood contact during intercourse. I told her that the disease was briefly acute within 6 months of so of contracting it and that if you did not clear the virus then, it settled down into a chronic infection often without symptoms. That, sometime many years later, the disease became symptomatic. The symptoms were liver damage, fatigue, depression and brain fog and that I was definitely feeling some of them. I had no idea how long I had been infected and there didn’t seem to be any way of telling how long and that I did not know how I had gotten it. She knew full well the range of behaviors I had engaged in that might expose me and, as mentioned in other posts, she had done everything I had. She had no intention of busting my balls over how I had gotten the disease. She was far more concerned about what this would mean for my health both in the short term and the long term as well. As for the treatment, I told her what I knew, that it was long, difficult and had a less than 50% chance of success.

She was worried and scared because the only recent contact we had with someone with Hep C was with an old friend who had been diagnosed very late in the cycle of the disease. He had cirrhosis by then, and was not a candidate for transplant. He died within 6 months of the diagnosis. She did not want that to happen to me (needless to say, I didn’t want that either).

She has a background (and 2 degrees) in science and her immediate response was to gather information. After we went home from the park and talked about it some more, realizing as we did that our information was limited to what I had found out on the internet. She immediately hopped in her car, went to the bookstore and got 4 books on Hep C. We spent a cozy and quiet Sunday evening reading about Hep C from the Dummies Guide to Living With Hepatitis C.

I think the fact that I was telling the news to a scientist made a big difference. My wife is used to understanding and learning about, scientific concepts and processes and in way, that is what is happening with my disease. It is something to be learned about, understood and then attacked. The fact that a treatment is available, regardless of the percentage rate of cure, is a huge plus in comparison to so many other diseases that I could have gotten.

We both lived in San Francisco during the 1980s. We both lost a whole swath of friends to AIDS. We still know long-time survivors of the epidemic. While there are many treatments for AIDS available that can fight the virus and extend the life span, there are no cures. Hepatitis C, on the other hand, has treatments in hand that can clear the virus from the blood and many new ones in the pipeline that promise ever higher rates of clearing. She had found this all out by late Sunday night and it helped a great deal to manage the fear and take control of her response to my disease.

Telling my wife I had a disease that had the long term possibility of needing truly serious medical care and possibly being fatal, was one of the hardest things I have ever done.

Week 10 Tests and Week 8 Results

Today was week 10 testing. All the usual tests though only 11 vials of blood for this series.

The important point to me was the Week 8 test results: viral load UNDECTECTABLE. Unlike week 6 when the test detected viral activity though the number of virus per ml was so low as to be uncountable, this time the test reported no detectable viral activity at all. So there it is, the polymerase inhibitor RG-7128 aka RO5024048 knocked the virus down from just under 13 million per ml to undetectable in 8 weeks.

AVB told me that the earlier a patient achieved the undetectable level, the better the chances are for an SVR (sustained viral response) over the long term. Eight weeks is pretty fast in general and tremendous for someone with my initial viral load. A few of the folks I have talked to about there treatment told me that they started with what was considered a high viral load and theirs was in the 3 to 4 million per ml range. Mine was about 4 times that number at the start of the treatment.

While it does not seem to have added any significant side effects to the general run of the SOC side effects, it doesn’t seem to have reduced any of them either.

The other good news was that my neutrophil count had bounced back up over the 500 level and I could continue the experimental drug. Even though I have hit undetectable levels and there is only 2 weeks left in the polymerase inhibitor part of the experiment, I still want to have the full course of treatment. I want that extra two weeks of this drug completely screwing up the ability of any virus left to reproduce. I want the full amount of destruction to be visited upon this virus. I want them hunted down and killed for as long as possible by the most complete range of attack drugs.

The main new factor to report on the side effect front is that my concentration and memory are continuing to deteriorate. As an example, I did not bring in a chilled urine sample for this test period. Why not, you ask. Because I stepped in to the bathroom after I woke up with my urine collection cup in hand, set it down on the sink and then urinated luxuriously and at length while completely forgetting to get a sample of if for the test. I remembered my test appointment and brought all my stuff with me, but remembering to piss in a cup was more than my brain was capable of.

Valentine for the Hepcat

Today is Valentine’s Day, which to my wife, is the most important holiday of the year. It is followed in importance by our wedding anniversary, but our anniversary is clearly in second place. It is more important to her to affirm our love for each other than it is to celebrate our marriage. After all, before we were married we were in love with each other and if we had not formally married, we would still be in love with each other and probably together as well. Neither of us can really figure out too many people who would have been able to put up with either of us for this amount of time and still be happy about it.

Over the years, we have had our crises both major and minor and have had times of strain in our relationship. Adding long-term, serious, contagious disease to the relationship however, throws a real wild card into the mix. Did one of you infect the other? If you did, is the other person able to handle that news without breaking the relationship? If not, does how the infected person get the disease break the relationship? Does the thought of possible infection so distress the uninfected person that they can’t handle continuing the relationship? Does the infected person wallow in guilt and self-pity? Does the uninfected one withdraw emotionally? Does the relationship break down with mutual recriminations and anger? Does the situation bring on support or rejection? All these and dozens more questions and problems crop up when you add a disease like Hep C into the equation of your relationship.

My wife responded in the most positive way possible. Since we had both had bouts of risky behavior in our lives (some when we were together) neither of us could point fingers at each other. To be fair, the finger pointing would have been one-way, as it turned out that only I had Hep C. My wife’s concern once we knew was entirely to discover what the disease was, what having it meant, and what were the long-term and short-term ramifications as far as my health.

She has been incredibly supportive. She has done research on the disease. She has helped with understanding and attempting to deal with the symptoms of the disease. She has come with me to important doctor’s appointments and brought her own questions and taken extensive notes about the responses we have been given. She came to the meetings about the drug trials I tested for. She assists me, now that the trial is going-on with injections and general record keeping of both dosage and side effects. She is constantly urging me to rest and not push myself to exhaustion. She tries to keep me fed and watered, though with my life-long erratic eating habits, that is an almost impossible challenge.

In short, I don’t know where I would be right now without her support. She is the most important part of my treatment. If I were alone and dealing with the exhaustion, emotional swings, depression, aches, pains, insomnia, nausea and all the rest of the mess, I do not know if I would be in remotely as good shape as I am in and I do not know if I would be nearly as successful in keeping up with the treatment.

Doing the blog was her idea and she would love to be contributing more often than the couple of posts that she has managed. There is something about not having enough time what with her two jobs, both with local non-profits, her part-time volunteer assistance to yet another non-profit and the job of trying to keep track of me and my health that gets in the way of contributing as often as she would like. Her heart has always been bigger than her time.

So, happy Valentine’s Day sweetie. I can’t imagine being with anyone else and thanks for all the love and support over the last 30-odd years. I hope we stay together for a long time to come and with the help of RG-7128 aka RO5024048 it will be time spent healthy. I love you.

Beware The Fog

Only the alertness and agility of youth saved me from seriously injuring someone this morning. It was not my agility or alertness, but the quick reflexes of the young man I nearly ran over in a crosswalk on the drive to work.

Morning has never been my best time. I have always moved slowly into the day, gaining consciousness and alertness as the day goes on. I am generally at my best in the evening, not the morning. I was always able to counteract this a bit, by drinking a big glass of green tea every morning before setting off. The troublesome interactions with caffeine that the treatment drugs seem to induce now require me to have only a small cup of tea in the morning lest I get extremely irritable and erratic in my actions.

The progression of alterations in behavior is a gradual process and as the person on the inside, it can be very difficult to notice. I clearly have not been noticing that my attention is more easily distracted and that my concentration often drifts off while I am performing routine tasks.

Several times a week, my wife drops me off at work on the way to her job and she either picks me up on the way home or I walk home from work myself. In either case it is a pretty safe way to go with minimal danger to myself or others. On Tuesday, however, I drive because it is the day I go grocery shopping for the week while my wife works late at her job. Today was Tuesday and I was driving.

I drove my small pickup and could not find parking along the street where I work. I had noticed a spot on the way, however and circled the block to get back to it. I pulled up to a red light and looked to take a right on the red. I did not see anyone on the sidewalk and looked left to check traffic. One car was turning left and another began to creep around his right to pass, and then put on his right turn signal and began to turn. Realizing that I was clear to turn, I started to turn the corner.

I guess I still had the sixth sense noting something wrong as I began to hit the brake even before I consciously saw the guy directly in front of me, leaping backward from my truck. The look of terror, rage and disgust on his face was sickening. I think only the fact that he could see the look of horror and fear on my face kept him from screaming at me and beating on my car. He merely glared at me and stalked away across the street. I turned the corner, parked the truck and just sat for a few minutes in a sort of shock. It has been a very long time since I have come that close to seriously harming another person.

It made me realize that I have been having more moments of inattention, loss of concentration and just drifting away. It has not happened very often when it mattered, but I have pulled up to a stoplight, then started across the intersection because I thought I was at a stop SIGN instead of a stop LIGHT. I have sat at a stop sign too long for exactly the opposite reason. This has not happened but a few times in the past six months, but as I rediscovered today, it only takes one time someone’s life can be ruined.

So be careful. Ask your friends and loved ones how they think you are doing. If necessary, stop doing some of the things that require more attention and energy than you can give. At the very least, make sure that you are feeling awake and alert and energetic before you start activities that can put you and others at risk.

I know that if I had hit that young man today both our lives could have been changed in a truly profound way. His through injury and all its consequences and mine because regardless of the legal ramifications, I would never have been able to forgive myself if I had badly hurt him.

Steel Gray Lining

The day I found out I had Hep C was a crazy day. I remember talking to my doctor and him doing a very minimal job of explaining the disease. I remember being stunned by the news that I had a chronic, long-term and serious disease. I also remember that I was confused and puzzled about what might be the consequences of having this particular disease.

I went online immediately and Googled Hepatitis C. I went to the most reputable (in my mind) web sites – the Mayo Clinic, the Centers for Disease Control, Johns Hopkins – and starting to read about Hep C. The first thing I checked was what having Hep C meant in terms of living my life. All the sites said the same thing, the best thing you can do to assist your body in fighting the disease and in dealing with the effects of the disease is to stop drinking. I remember the “oh, shit” reaction to that as I realized that it would be a major change in my life. My wife and I usually had wine with dinner and there is nothing quite like a cold beer on a hot day or after a long days’ physical work. But I didn’t think much about it past that because when it is put in terms of “keep drinking, die faster; stop drinking, live longer,” it creates a clear-cut choice and one I didn’t have a great deal of trouble making. In the 14 months between being diagnosed and entering treatment, I drank on election night 2008, Thanksgiving 2008, New Years Eve 2008, Valentines Day 2009, My Birthday 2009, Calistoga vacation 2009, Thanksgiving 2009 and Monterey Vacation 2009. Even my Gastroenterologist didn’t have any problem with my behavior.

Then I read about the long-term effects of Hep C. The endgame of cirrhosis or liver cancer and possible transplantation all were very serious, but they were all very long-term. All the discussion of Hep C indicated that it was a disease that progressed slowly. You probably have it for years in the chronic state before it finally begins to produce symptoms. Even after it goes symptomatic, most people have a considerable period of time before it reaches the endgame state of treat, transplant or die. This is all somewhat reassuring in that it removes the pressure to decide Right Now what to do about the disease. You have some time to do research, to have more detailed testing done, to examine your personal life situation and then to reach a decision about what to do, what course of action to take.

The next stage of research was reading about the symptoms and side effects of having Hep C as an active infection in your body. The three I remember making an immediate impression on me were: fatigue, depression and brain fog.

They defined fatigue as a general lowering of energy. It is not something that automatically means exhaustion or collapse or some such. It means that you notice you just don’t have the energy to do either the same types of activities you have normally done in your life or you can’t do them as long or as intensely.

Depression is the fact that you don’t Want to do as much as you did before, or the things you used to like to do or just to do stuff at all. It doesn’t have to be a serious clinical state of having a hard time doing day-to-day activities or really having no desire to connect with your life. It can be a sort of general malaise that keeps you from being as excited about new projects, new activities or just doing the things that you enjoy.

Brain fog is a general decrease in your cognitive abilities. It means you have a hard time paying attention, keeping a train of thought, and have problems with short-term memory or concentration. You just don’t generally feel as sharp as you did in the past. You might notice you are forgetting more, or doing something that doesn’t make sense or not being able to remember why you are doing something or being somewhere (at least more that the normal level of forgetfulness and brain-lock).

I had all these three in spades and, as the Executive Director of my organization (known forever forward as DB the ED) said to me, maybe the steel-gray lining within the cloud of learning I had Hep C was finding out the symptoms I had been having had a definite cause. I had a definite reason for the behaviors I had been experiencing for the last few years. It wasn’t necessarily just that I had slipped into a mild depression; that I had somehow become lazy and shiftless; that I was feeling the onset of Alzheimer’s disease or some other mental depredations. I had a serious viral infection that produced these sorts of effects as a result of its activity in my body. This knowledge definitely produced a sort of relief. It’s a strange sort of relief to be able to say that depression, fatigue and mental deterioration are the result of a long-term, liver-destroying viral infection. But to have a solid reason that is not dependent on the variable biochemical definitions of depression, clinical or otherwise, somehow gave me a more solid form of hope.

It is definitely Not a silver lining, but a lining it most definitely is. And steel-gray or not, it gave me a much firmer grasp on my recent past and a clearer picture of the future.

Support Group: The Kindness of Strangers

I went to a Hep C support Group for the first time yesterday. I had wanted to go for a while, but my first attempt was aborted when I was so tired I just went home to bed right after work. The next time I tried was about 10 days ago. I discovered when I arrived that the group was on hiatus. Third time’s the charm however as I forced myself to go even though I was tired it was an experience I would recommend for anyone with the disease.

The group has been going on for years and had a wide range of people and stories. There was an individual who had been through the full 48 week treatment twice and relapsed both times. Another person was several months past the end of a 72 WEEK course of Interferon and Ribavirin. Another had been through treatment in the late ‘90s when you had to inject the Interferon 3 times a week and had been clear of virus for over 9 years. Others had not decided to do treatment yet (or even ever) and some were in the middle of it like myself. Even though the group was not large, it encompassed most of the range of experiences of people with Hep C.

It was a useful experience to hear someone in the room say, “Oh yeah, I had that,” or “Usually that one levels off after a while,” when you mentioned one of the effects of either disease or medication. It seemed that anything that anyone mentioned about how they were doing or what particular challenges they were facing now was generally met with either sympathetic understanding or a tip on how you might be able to deal with it.

I have to say that I was impressed with the matter-of-fact attitude (and humor) of the people in the group. I’m only 8 week in to treatment and I cannot imagine going through this for 72 weeks or 48 weeks TWICE. Yet everyone could joke (at some level) about what they had gone through in the past or were going through now.

It is also good to know that others feel the same frustrations you do. The brain fog was a major complaint of everyone in the room, followed closely by fatigue and general loss of energy. It was also heartening to hear from the folks who had completed treatment and cleared the virus that things return to normal. It may take a long time for you to find your brain and get your energy back, but mostly, you can come back and be yourself. It is a great comfort to know that there is light at the end of the tunnel, even if it is a damn long tunnel.

I don’t feel badly that I did not find a group earlier, but I am glad I found one and I intend to go back on a regular basis. I don’t know what it would have done for me to go while I was diagnosed but not in treatment. I think if I had decided to wait a while for western medical treatment and instead decided to try to manage the disease through other means, going to a group would have been a major benefit. It seems everyone has a strategy for particular symptoms and the group knowledge represented is quite impressive.

I recommend finding a support group to anyone with the disease. Whether you feel the need for emotional support or would like the ability to tap in to a great deal of experience and knowledge, you will definitely feel the kindness of strangers.