Six Months Later…Viral Breakthrough

I recently had six month after treatment blood test to determine if I achieved a sustained viral response or SVR. The results came back today and the Hep C virus is back. My viral load is currently at 1 million IU/ml. This completely sucks. 18 months of interferon and ribavirin including 5 months of an experimental polymerase inhibitor RG7168 aka RO5024048 that produced the side effects of weight loss, depression, inability to concentrate, lack of energy, memory going to hell, anemia, and I'm sure others, that the memory problems prevent me from remembering; all of this to achieve nothing. It is getting hit by the million pound shit-hammer all over again.

 I knew at the beginning that the traditional therapy only resulted in a 45% chance of clearing the virus. So when I had the chance to get into the trial of the RG 7128 aka RO5024048 polymerase inhibitor which, in early-stage experiments had demonstrated a rate of clearing the virus of up to 75%, I jumped at it. I'd hoped that the experimental drug would clear the virus. Even after the viral breakthrough that resulted in my expulsion from the test group I still thought that transitioning to standard therapy after the initial success of the experimental drug might give me a small leg up on clearing the virus.

Perhaps the fact that it took 12 weeks for the traditional interferon/ribavirin therapy to bring my viral load down from only 40,000 IU/ml to clear should have tipped me off. Maybe it should have shown me  that the strain of virus that I have would be resistant to my own immune system and traditional therapy and I would perhaps be more likely not to clear the virus then to succeed, but no one wants to face that possibility. When you have already been in a process for six months and you've already faced the side effects and found that, to a point, you can handle them; and you believe you have a chance of clearing the virus; and you don’t know what your health insurance is going to be like in another year or two or whenever a new therapy might come online; and the fact that you have insurance now; and you’re stubborn and you're optimistic; it all puts you in a mind to say I'm going to see if sticking this out will succeed in bringing me to a sustained viral response and a cure.

Well it didn't. So in a sense I look at the last two years of my life, the 18 months on the therapy and the six months beginning to recover from it until the day of the test, as being wasted. I did not get much accomplished during those two years. While I was able to do very good things at work (including expanding the scope of my operation, systematizing and streamlining all of the processes, integrating a part-time person and training them in handling the basics of the operation, and increasing sales and average of 25% per year), that is cold comfort. Just doing that, just functioning on a day-to-day basis and going to my job eventually took so much energy that it left little time and little energy for any part of a personal life. My work and efforts as a sculptor were minimal, my ability to do things with my friends and family were cut way down by the fact that it was exhausting to do anything for very much time at all. It all infuriates me even though I knew that it was only a 50% chance at success. I don't think anyone ever enters a situation like this thinking that they're going to fail and I certainly didn't. The fact that the therapy did not work leaves me feeling somehow cheated. It's not rational, but there it is. You feel that if you spent that much time, that much energy (or lack of it) invested that much hope and effort, something better should have happened. It didn't and I feel somehow empty.

All that being said, on the good side all my liver functions are normal. My doctors tell me that the results that they're getting from the liver tests would indicate that the time that I spent clear of the virus during the therapy, (which totaled about 12 to 14 months out of the 18), allowed my liver to begin to heal itself. The swelling is reduced. It is functioning well and I have bought additional time with a healthy liver. I also learned that I can handle the therapy. I learned that the side effects I got with the standard interferon ribavirin  chemotherapy and with the RG7128 are ones that I can manage. I know that a lot of people have a much more difficult time than I ever did during the traditional therapy. There are people who are so exhausted they can barely move; people whose anemia is frighteningly intense; people who have much more severe depression; people who lose even more weight than I did; people who have even less energy and people whose cognitive facilities and memory decline even further than mine. I realize that the ones who have it far worse than I did must feel even more empty or betrayed or depressed when they find out that it didn't work. Because as difficult as it was for me, if I had gone through even 12 months of the sort of difficulties that others with this disease undergoing the same therapy went through, I don't know if I could ever face doing it again.

 I'm sure at some point I will do it again. I don't like the idea of managing this disease. I don't like the idea of having something in my body that is gradually destroying my liver, breaking down my cognitive functions and creating in the long run a less energetic less mentally sharp individual. I don’t like the possibility of developing serious liver problems that might include liver cancer, cirrhosis and result in the need for a transplant. Though  my doctors told me that given my liver results I am the sort of person who is more likely to die with hepatitis C than from hepatitis C, I don't want to have it at all. The idea that a lifeless particle of protein wrapped around some DNA is working its way through my body destroying my liver doesn't fit my disposition. So I will try again at some point.

 I don't know that I will ever try interferon therapy again. It is extremely devastating and I don't know if I can face it even though I do suffer it better than many other people. There is a tremendous amount of research going on and a lot of that is oriented towards non-interferon drug combinations to attack the virus. There's a lot to look forward to and I know that I'm in good shape to see where it leads.

It's still depressing, it still sucks but you buck up and handle it the best you can. Even though I've been whining for most of this post, I know that my life is a hell of a lot better than a lot of other people in the world and especially a lot of other people with Hep C. Besides, Spring Training is right around the corner and how can you stay depressed when pitchers and catchers report in only six weeks,

Anger Management Revisited

I have noticed that anger management issues are cropping up once again as my chemotherapy drags on. In an earlier post, I talked about the first bout of it I had several weeks into the RO5024048 study. It’s coming back again, though with a decidedly different twist. I am not having problems dealing directly with irritating people, but I am having extended arguments with them in my head. I think this could be attributed to one of two side effects or a third cause that is due my current circumstances.

The first would be depression. I am on Celexa and do not feel that I am depressed. I remember what I felt like before I started on the antidepressants and this doesn’t feel like that. I am a bit tenser than I have been and I have a theory about that I am going to check out this week. I noticed that once I started on levothyroxine for my low thyroid function, I became more jittery than I had been before. There was a bit of an adjustment period when I started on antidepressants but that had leveled out a bit by the time I started on the thyroid meds. I then noticed a definite step up in nervousness when I started taking the thyroid meds. I wonder if my thyroid is working better now and my dose is too high and whether the thyroid meds might be interacting with the antidepressants to make me a bit too edgy. I am calling my primary care doctor tomorrow to set up an appointment to test my thyroid hormone levels and perhaps adjust my dose.

The second possibility is the mental problems that can be caused by interferon and ribavirin themselves. It is a known side effect of this combination of drugs that can include irritability, depression, aggressive behavior, suicidal behavior and suicidal or homicidal thoughts. I have not been thinking about killing myself or anyone else. I have indeed thought about letting a few individuals know what I really think about their attitude and behavior and doing it in no uncertain terms. I have imagined these (admittedly one-sided) conversations in vivid detail. I have not, however, actually done any of this and I have not noticed that my behavior towards others has become more aggressive. I am trying to keep a close watch on this and am going to wait for the results of the thyroid tests and any dose adjustments before I address the issue of whether my antidepressants need to be adjusted.

I do note that my behavior has become more decisive, but no one has mentioned that I have been abusive or angry toward them, and I have been asking for feedback if that happens. I find that in situations start to degenerate into indecisive dithering, I am becoming more apt to step in and tell people what to do. This does not seem to me to fall under aggressive behavior in the way they mean in the side effects description, but I am definitely wary of my reactions and behavior.

The third possibility is that some of this is the result of a long hard seven days of dealing with our organization’s biggest event of the year. I have been working longer hours than usual, in more crowded and chaotic circumstances than usual, doing more stressful work than usual. There is nothing like dealing with the sort of obsessive, picky and occasionally barking mad people that populate a used book sale to drive stress levels to the stratosphere. I don’t believe it is entirely due to this circumstance that I am noticing my inner dialogue moving more to “that stupid little prick” sorts of expressions than usual, but it must have something to do with it.

So until I get to see all my doctors about my meds, the knives stay in the drawers and the guns and ammunition on separate floors of the house…

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.

Why Research Trials put the P in Pain, the F in Fatigue and the M in Mental Breakdown.

The pitfall of participating in a research drug trial for Hepatitis C is that it will tax your mind and body more harshly than if you underwent the standard treatment or Standard of Care. The upside of participating in the trial is that you get a chance to take a drug that improves (sometimes drastically) you chance of clearing the virus. In order to do the research necessary and gather the data needed for the study, the subjects of the research are required to enter the study “naked” or without the support of drugs and supplements that can help mitigate the side effects of the anti-Hep C medications, at least until the study doctors decide to administer any such mitigating therapies. (The word “naked” refers to a baseball term reported by Hall of Famer Tony Gwynn of the San Diego Padres. He stated that during his time in the Major Leagues players who took the field without using amphetamines were said to be “playing naked”).

What this means in practical terms is that the subjects of a research study will experience all the side effects of the anti-Hep C medications without the benefits of many of the established remedies that patients who undergo the Standard of Care of Pegylated Interferon and Ribavirin can take advantage of from the very beginning of the study.

Pegylated Interferon is well known to cause depression, fatigue, brain fog, nausea, insomnia and depressed white blood cell counts. Patients undergoing SOC through their doctors are often prescribed antidepressants before the start of the study in order to combat the depression. They are routinely prescribed anti-nausea medications and sleep aids from very early in their treatment to deal with those particular side effects as well. Ribavirin is well known to cause anemia (often severe), itchy rash, nausea and muscle pain. SOC patients are prescribed drugs to combat the anemia, given anti-itch creams (often with steroids), anti-nausea meds and painkillers for muscle and joint pain. These are usually given as the symptoms are reported and continue for the length of the treatment. This is not exactly the case with the subjects of a research study and there are very good reasons for that.

As I discussed in this post, the effectiveness of the Hep C drugs and the results of drug interactions are complex things to parse. Combine that with trying to track the side effects caused by the study drugs and you need to control as many of the variables as you can for an effective study. To that end during the screening process for the study, the study doctors want to know every drug and supplement you are taking. If any of them would interfere with their ability to determine the effects of the study medications, they will ask you to stop taking them or, if you cannot stop taking them for medical or other reasons, they may disqualify you from participating.

The same need for a controlled medical environment applies once the study begins. The researchers need to track the efficacy of the treatment drugs and the number and severity of the side effects. To do this, you need to experience the effect of the drugs and the side effects of the drugs without the interfering effects of other treatments and if there are other compounds you are taking, they need to be able to track their use.

So you are going to experience the side effects in full force. It is when the side effects are either dangerous or interfere with your ability to continue with the study that you may be prescribed something to help you deal with them. To use my case as an example, I have not and will not be prescribed anything to deal with the anemia caused by the Ribavirin. This is because they want to track as clearly as possible whether this new combination of drugs changes the instances and severity of the anemia. Many other individuals I have talked with about their treatment experience were given drugs to stimulate red blood cell production. Rather than do that the researchers have adjusted my Ribavirin dose to try to keep my hemoglobin count above the minimum they require to continue the trial. I have not been given anything to help with my white blood cell counts but have had my interferon dose adjusted and even skipped to attempt to keep my neutrophil and lymphocyte counts above the minimum to continue the trial. When I began to report muscle pain associated with treatment, I was told to take over the counter medications. It was only when I reported that the pain acute enough to interfere with my sleep, that I was prescribed a painkiller.

Interruption of your normal sleep patterns is one area that they respond to fairly rapidly. The researchers believe that getting enough sleep is vital to your ability to be able to complete the study. They want to hear if you are having difficulty sleeping and they want to be the ones to determine what remedy, be it over the counter or prescription you are going to take to combat the problem. It is a matter of controlling the variables again. In my case, about 6 weeks after the had prescribed the pain med Tramadol to deal with the pain that was keeping me awake I reported that I was having difficulty getting any more than 4-5 hours of sleep per night. They immediately prescribed Trazadone to help me sleep.

Depression is another major side effect that gets handled differently in a study. Unless a patient was already taking an antidepressant previous to screening for the study, they generally do not prescribe them until the researchers believe they are necessary to your ability to complete the study. Those of us undergoing the study in San Francisco were all given information on strategies to handle the stresses of the treatment and programs to give support to Hep C sufferers, but we were not prescribed anything for the condition until they were convinced we needed it. In my case it was about 18 weeks into the study before AVB began to believe I needed to be given something. By that time, it took me three weeks to gather my thoughts and energy enough to realize I was beginning to tip over into serious depression. At that point, they moved fast and started me on SSRI antidepressant drugs.

All these discussions and examples are provided to make sure you think about this aspect of a research study. I did not consider it at all. It was not until I had been in treatment for a few months that I went to a support group and talked to people who had undergone the standard treatment, that I found out that they were routinely prescribed things to deal with side effects. It was then that it hit me that as lab rats for Roche, we were going “naked” in the study. I have a bit of background in science and my wife has “A Masters Degree In Science,” as Doctor Science used to say. We both realize that controlling study variables is essential to getting good data and ending up with a useful study. I just didn’t think clearly at the beginning of the study, that I was the one whose variables were being controlled and that might mean the course of treatment might be a bit rougher than the SOC.

Knowing what I know now, I would not choose differently. In my mind, the chance to take a drug that increases my chances of clearing Hepatitis C genotype 1a by 50% is worth the potential of having a harder time in treatment. I wish I had thought it through and prepared myself mentally for the realities of what that would mean, but I would not change my decision.

Your decision is up to you. Think it through; be aware of what entering a research study means and then with the most forethought you can, make up your mind.

New Morning & Another Reason for Keeping Notes

It is very clear to me now both why doctors prescribe antidepressants and why patients endure the early symptoms until their brain chemistry stabilizes and the drug begins to work. I feel…better. It is a curious state to attempt to describe. As my friend BS says, “You generally don’t notice feeling okay or good, but you do notice when you feel bad.” There is also the fact that as you experience a particular state for an extended period of time, be it either feeling good or feeling blah, you come to take it as your normal state and forget that you used to feel differently.

In my case, I realize now that the treatment regimen had gradually been grinding down my mental energy and state of mind. I had not noticed it as it happened though the folks running the study, and AVB in particular, claimed that they could see it happening to me. They actually had the advantage of seeing me intermittently as opposed to every day. This allowed them to notice the changes more clearly because they showed up as significant differences. It’s like the first time you spend some serious time away from home. When you return you notice real changes in your parents and siblings that would not have been nearly so obvious had you been with them on a daily basis. Likewise with me, my wife and I were immersed every day in the grind of treatment and thus the incremental changes became what were normal as opposed to something we should be paying attention to. If nothing else, the declining number of posts per month to this blog should have been a tip-off that the depression and why-bother attitude induced by the interferon were taking a very real toll.

Now that I have been taking antidressants for about 3 weeks and Celexa in particular for about 10 days, I feel a bit better; a touch more mentally alert; less likely to have the why-bother attitude. I still get tired and lose the ability to concentrate by early afternoon, but now when I get home, I don’t just drop onto the sofa and watch a couple hours of awful television in a kind of passive stupor. I still turn on the TV, but I now get bored after a while and find something else to do. The ability to be bored by stupid, mindless crap is a great gift of mental achievement that has been returned to me by modern bio-medical research and I am grateful.

This is yet another reason to keep notes about yourself while you are in treatment. If I had done nothing more than record the number of hours I was watching television, it might have tipped me off that my mental outlook was going downhill. So take notes, date them and look them over from time to time as treatment goes on. You have to review them regularly because the interferon is going to fog your brain and ruin your memory during treatment. If you do these things, you can stay ahead of the side effects and do your doctors a great service by having good information to give them. Both of these things will help you come through you treatment more successfully.

PS: A purely personal note about Celexa because it means a lot, SEX IS BACK!

Round and Round the Drug Carousel.

It’s been a few more days and the antidepresseant cycle has modified into a steady spaced out condition. It has the sort of charectaristics I mentioned in the past post be without much nervous energy, or any energy at all for that matter. It’s sort of a passive, pleasant, unconcerned state of mind. I have no real idea if that is the intent of using antidressants in the context of a chemotherapy regimen, but that is where we are.

My weight has stabilized, but the sexual dysfunction persists. I don’t really have the interest to even attempt it anymore. That fact that it doesn’t bother me creeps me out.

I went in today for yet another redraw to check neutrophil and lymphocyte counts. They were low enough last week that I was told to skip my interferon dose. They hope that the interruption of the interferon dose with allow a bounce back of my white cell counts and allow me to resume the interferon with the next dose.

After the blood work, AVB quizzed me at length again about my reactions to the Paxil, whether the Ativan had helped with the symptoms and how I generally felt about being on the Paxil. I told her about the powerful initial side effects and the time it took for them to call down. I mentioned that I was now in a state of steady unconcern with a side order of being spaced out and out of focus. I also told her that I thought that Doctor NB could do a great favor for future patients by spending some time to go over the more likely side effects and the periods of time that they might expect them to last. AVB asked whether the pharmacist went over the side effects and I informed her that at my inner city pharmacy, their was never much in the way of consultation.

I also went over the sexual side effects. She was quite concerned and put in a call to Doctor NB for a consult. As she said, the treatment is hard enough to deal with without removing your enjoyment of a basic component of living. She also mentioned that sex is one of the ways for couples to feel close to each other and offer support and during treatment, you need that more than ever.

It took about 25 minutes for Doctor B to arrive and the fact that I sat calmly and stared out the window without a care in the world for most of that time speaks to the spaceyness I was feeling.

When she arrived, Doctor B apologized to me for not spending the necessary time on side effects the last time we talked. She stated that they often left that to the pharmacists but that was not really acceptable. It was gracious and heartfelt of her and I appreciated it. After hearing about the sexual issues, she decided to switch me to another antidepressant. This one is also an SSRI, but is a different drug. It has a much smaller incidence of negative impact on sexual functioning. She went over the expected side effects (hooray!) and sent me out the door with a prescription for Celexa. She told me to hold on to the Paxil because you never know.


After Doctor B left, AVG talked about the many and varied forms of antidepressants. She said that someone like myself who is a virgin to those types of drugs is much harder to prescribe. Many people come into treatment with a history of antidrepressant use due to the side effects of Hep C and thus already know that Welbutrin works, but Zoloft, Prozac and Celexa do not for example. It may take even another drug before we settle on the best fit for me.

So once again, I am armed and dangerous with celexa in my holster and heading for a showdown with my other drugs, or something.

Doing The Serotonin Space-Out

The speed rush has finally mellowed. I am no longer jittery with loads of nervous energy. I am now in a mostly calm and definitely spaced-out frame of mind. There is still a bit of jumpy legs and feet that comes on in the evening, but half of an Ativan generally calms that down.

It is difficult to describe the state I find myself in. It feels as though both of my eyes are not focusing together. While I can see clearly when I concentrate on something, those things at the edge of my visual field seemed to be focused at different distances. When I turn my head and move my visual field it has to come to a resting point before everything seems focused. It is as if there is a piece of slightly distorted glass between my eyes and what I am looking at.

This feeling is not disconcerting because my mental state is definitely toward the unconcerned side of the spectrum. I find both the visual and mental effects to be interesting, but ultimately of little matter. I am concerned enough to limit my driving to the minimal I need to do to handle my treatment and occasionally my job. I don’t intend to return to driving as much as I did a few months ago until this all settles down.

There is an additional side effect which is of concern. The fact that it is important to me and yet still does not make me upset or anxious certainly speaks to the power and effect of the antidepressants. Antidepressants in general and Paxil in particular can cause side effects in your sexual functioning. I have noticed a definite and extreme drop in my libido. I don’t much care about sex and indeed have not had an erection in about 5 days. The few times I have achieved an erection and engaged in sexual activity, I have found that it is impossible to have an orgasm. This is most frustrating and that frustration can cause a real impediment to the intimacy that sex brings about between two people. You are much less inclined to want to do it if there is no payoff at the end of the process. The wife of an old friend of mine had the same problem when she was on Prozac. She still liked sex but the complete inability to have an orgasm eventually drove her to swear off all antidepressants.

I am not going to go that far, but I am going to talk to my doctors. I am going in for yet another blood redraw (the 10th time) and will sit down with them and go over the side effects I am experiencing. There are a wide range of antidepressants with a number of mechanisms for achieving their effects, so it is certainly possible to switch from one to another until you find one that works best for you.

It is most important to keep in close touch with you doctors about the effects whatever antidepressant you are taking is having upon you. If they are debilitating or just very difficult to endure, talk about changing drugs. There are a wide range of them. All individuals react differently to the individual drugs. So moving from one to another to find the one that works best for you is standard procedure for these drugs. Do not let your doctors tell you that you have to endure difficult or debilitating or scary side effects. You do not and in fact have the right to get the best treatment for your situation.

So use the calm resolution that you are striving for to stand up to the man if you have to. Insist on your right to the correct drugs. Make sure that you keep communications open so that you and your doctors can finally settle on the treatment modality that is best for you.

Believe me, it’s better than being spacey, impotent, anxiety-ridden or suicidal, really.

Coming In Off The Ledge

We finally had the conversation about antidepressants this week, 21 weeks into the trial.

It came about because I had been noticing that I was feeling an increase in impatience and tension during conversations with people. They were the sorts of conversations you have all the time with co-workers, your partner and your friends. It seems that when I would talk to my wife in the evening about how her day had gone, I could feel myself get tense if she talked for very long at all. The same thing happened with co-workers. I found myself thinking, “all right, I get it, you don’t have to keep going on about it, just leave me alone.” This did not happen all the time, but it was increasing in frequency. Just a note, I was not saying any of this stuff aloud, but I was thinking it, sometimes forcefully.

The study coordinator AVB called me to tell me that they needed to redraw blood because my neutrophil count was so low. They wanted to determine whether to adjust my next interferon dose to a smaller amount. I mentioned that I had been noticing a subtle change in my mental state the past few weeks and told her the nature of it. I told her that when I came in two days to do the blood draw, I would like to talk to someone about whether something needed to be done. She said that I should come in immediately. It took awhile, but I managed to convince her that it wasn’t so serious that I was going to start running people down in my truck or screaming at my wife and coworkers. She finally agreed that it could wait till Friday and we left it at that. Her main concern from years of experience was that these sorts of small changes could quickly escalate. Her example was a patient who suddenly started ramming people with her shopping cart at Costco because they weren’t moving fast enough. I promised I wouldn’t do any shopping before Friday.

When I came in for my appointment, they did the quick blood draws and then AVB quizzed me at length about my mental state. I repeated what I told her on Wednesday and then answered her questions about all my various side effects. She told me that even though I had been telling her that I was getting along okay over the past several weeks, she had been noticing some deterioration in my mood. She said that even though I was a tough guy who was intent on soldiering through the treatment, she had “seen it in my eyes” that I was having an increasingly difficult time. I had to tell her that she was about the only person I could remember who ever used the words tough guy to refer to me. Sure I have a generous helping of Slavic fatalism, midwestern quiet desperation, and general stubbornness, but actual toughness, not so much. Nonetheless, she paged the study doctor NB to come in and go over the situation.

When Doctor NB arrived, we went over the same material and discussion of mental state and symptoms. She concurred with AVB that I might be approaching a tipping point in my mental state. Her solution to the problem was to prescribe the antidepressant Paxil. She also prescribed Ativan as something to take when needed if I felt anxious. She said that Paxil can take 2 weeks or more to take effect and that the Ativan would be something to use as a bridge until the Paxil kicked in.

So now I will be starting antidepressants as soon as I fill the various prescriptions. I am not sure what to think about that or what to expect mentally when I start taking them. I have no real feelings about antidepressants, though they do defeat the concept of Slavic fatalism. My wife took Paxil about 15 years ago and it helped her a great deal. I have also found, through talking with other individuals who have gone through treatment, that I am one of the few people who started treatment without being given antidepressants right at the start of treatment.

When I told my wife that I was going to start taking Paxil, she reminded me that for the first few days she had taken it she felt “rubbery.” While we have no idea what my reaction will be to starting the drug, I am definitely expecting some sort of side effects at the beginning. I guess it’s time to hit the internet and start my research…

Baseball Adds Life

“People ask me what I do during the winter when there is no baseball. I tell them that I sit at home and look out the window and wait for spring.” Rogers Hornsby, member of Baseball’s Hall of Fame.


Thank god for opening day. Thank god for spring and the activity that heralds the coming of summer and better times: spring training. Nothing quite lifts the spirits like the sound of a bat hitting a ball, the smell of the grass, the feel of the sun on your face and your arms. The feeling of tiny drops of sweat popping out on your arms and your face as the warmth soaks in. The gentle slide from day to evening and evening to night and the perception of the lights taking effect as the darkness descends around the field. The pop of the catcher’s glove as the fastball darts across the plate. The chatter of the players against the backdrop of the continuous hum of the crowd. The sound of the announcer listing the batting order and naming the players as they step up to the plate. Taking the cardboard off the top of a frosty malt and digging in with your wooden spoon. All these sensations and more that herald a new season and a chance to watch your team through the long summer just like you have for 20 or 30 or 50 years. It banishes the other cares and worries and lets you experience an afternoon or evening purely on its own terms. I’m sure you’re getting the idea that I love baseball and am a lifetime fan. It has been an eagerly anticipated summer activity since I started playing catch with my brother in the backyard when I was 7 or 8 years old. It has never been more anticipated than this year.

It has been a long, cold, wet winter in the SF Bay Area. While we didn’t get the massive blizzards and frightful cold that afflicted other parts of the country, we did get day after day and week after week of damp, cold weather. The sort of damp cold that seems to soak into your bones and take up permanent residence. It is not helped much by the fact that most old houses in the Bay Area are poorly insulated and not well served by their furnaces and most of the light industrial spaces are not heated at all.

I really noticed that I was really dragging about 3 weeks ago. The treatment has made me much more susceptible to cold and becoming chilled and I was cold all the time. I also had a cold (which, curiously enough, refuses to leave), no energy and shortness of breath. It was light for only a short time before I went to work and was usually dark by the time I got home. I was frustrated, pissed off and not the most pleasant person to be around.

But then daylight savings time kicked in and the months-long cold weather lifted. It was light out, with actual sun, and I did not have to wear a short sleeve t-shirt, a long sleeve t-shirt and a sweatshirt at work. I could take off the fingerless gloves that make keyboard work such a joy. And the Giants began to play spring training games and those games were on the radio.

For the last two to three weeks, I have had more mental spark (in not more actual physical energy), I have felt less depressed, less angry and have begun to talk to people more. My wife claims I have begun to rant about the doings of the local politicos and people in the news, which she takes as a sign, my personality is returning. This weekend, I will journey to the south for the annual ritual of my fantasy baseball auction (said auction being something I have done in one league or another for 27 years now). The preparation for the auction, the following of scouting reports, the attempts at trades with my fellow owners, the updating of my lists and charts has brought me out of the doldrums and genuinely back to life.

The last few days have been the night sweats phase of the weekly interferon cycle. I have recently returned to a full dose of interferon from the ¾ dose I have been doing for the past 9 weeks and that has also meant the return of chicken-skin rash and itching to my arms and lower legs. The full dose has also meant the return of more aggressive insomnia and generally restless sleep. All of these suck, to use an honest but not particularly artful term, but I have actually not been letting them bother me. Sure I have to change t-shirts and sheets and be more disciplined about my behavior to try to help me sleep, but I am also getting up each morning and checking the players out online and reading the local sportswriters, (no matter how stupid their material) and looking forward to what will happen during the day. Baseball and Spring have made a huge difference in the trajectory of my treatment.

AVB, the study coordinator, talks about how everyone hits the wall at some point during treatment and how you have to find some way to fight through it and continue to have the best chance of success. I am not sure if this was my wall or just a hurdle, but having a passionate interest in something to take my mind off the treatment and push it back to being a part of life and not the thing that dominates life has been, to use the pathetic cliché of the sportswriters, “a difference maker.”

The treatment regimen made me much more aware of the effects of the seasons on my mental outlook than I have ever been before. It is something I have to remain aware of as the treatment wears on. Some of the feelings and effects are dictated by my own responses to my environment and not entirely by my responses to the drugs. My environment has improved and my life is better.

So whether it is getting out and riding no matter how bad you feel as the guys over at Hep C Straight Up do or turning on the radio an listening to Glen Kuiper and Mike Krukow announce a Giants game as you work in the yard, find something you love and dedicate yourself to enjoying it as often as possible. And keep your sheets dry if you can…

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.

Artificial Emotions

One of the stranger factors of being under the influence of drugs either experimental or otherwise, is the experience of emotional states that have no relation to your surrounding life circumstances.

Today, I was at the tail end of the working day, alone in the warehouse, finishing up some research on some new and interesting books that had just arrived. It is always enjoyable to be rooting through boxes and finding interesting and potentially valuable stuff hidden away amidst the general run-of-the-mill donations.

As an aside, I work for a non-profit Friends of the Library organization. The part of the organization I work in collects donations of used books and then sells them to raise money for the library. I have experience in the used and rare book field and am specifically tasked with finding the more valuable items and then, generally, selling them through online sales venues like Amazon.com, eBay, and Abebooks.com.

I went upstairs to my desk to finish up some last minute email correspondence and order processing when wham, I was suddenly sad, depressed and tired. Not the tired at the end of the day sort of thing, but the can’t-keep-your-eyes-open kind of tired. My wife called to let me know she was leaving her office and heading out to pick me up and I felt like crying just listening to her. Combining the sadness and fatigue got me right into a great little minor depression. Then when I got home I collapsed in front of the TV for a bit and felt like weeping while watching a bit of the movie "Dave." Now as anyone who has seen this movie knows it is not exactly a three hanky movie. None of this had anything to do with what was going on in my actual life. It was entirely caused by the drugs.

Luckily I knew what was going on. I could actually step back a bit, mentally, and realize that even though I felt bad, it had nothing to do with reality. Maintaining that perspective will be a challenge, but at least I am starting off knowing that it can happen.

This is one of those times that having experience with mind-altering drugs, particularly hallucinogens, is clearly going to be a benefit. I know intimately that small amounts of drugs can have overwhelming effects on your mental and emotional condition. LSD, for instance has powerful effects at a dosage of 300 micrograms, which is an astonishingly small amount of substance. It’s not just that you see your grandmother crawling up you leg with a knife in her teeth, as Hunter Thompson put it, but that suddenly you can be ecstatically happy and within moments be consumed with abject horror. Anyone who has taken LSD or any mind-altering drug can relate to these effects.

The key for folks who may not have any experiences like this is to try to maintain a bit of distance from your own feelings. This can be very difficult to do as you absolutely FEEL that you are sad, depressed and unhappy and it is tricky to separate this very real feeling you are experiencing from the actual circumstances of your life at that moment. This can be particularly challenging to do over time especially as the drugs bring on anemia, exhaustion, muscle weakness or other side effects that genuinely start to make you feel crappy. This is where keeping a journal; even one with very brief entries can help. It doesn’t have to be extensive, just a quick note about the actual circumstances perhaps contrasted with what feelings you are experiencing.

The other big helper is a support group. Keeping in touch with a group of folks who are either going through the same thing as you are right now, or have done so before can be of enormous support. Checking the web for support groups in your area is a first step. If you are not convenient to a physical group there are lots of blogs and bulletin boards out there as well with people who are more than willing to chat with you. The links on the side go to a lot of those resources.

The long-term struggle will be to remember that it is the drugs that are causing many of the feelings. That will be considerably difficult during this trial as it goes on for a minimum of 24 weeks. Even really powerful acid is usually gone in 24 hours