Ruminating Before The Retest

I retest tomorrow to determine what my viral load is and, after the study governors review the numbers, find out whether I am bounced off treatment. Until the results come back I’m just drifting along in an indeterminate state. It’s like the experiment in quantum physics where in one instance light behaves like a particle, in another it behaves like a wave. If I’m back to undetectable, I am carried along wavelike in the tide of treatment. If I still have a detectable viral load, I am tossed up particle like onto the shoreline to watch the ocean go by.

As I wait, I’ve been thinking about what I think about the disease. In journalism they ask the questions of Who, What, Where, When, How and Why. As I mentioned back in my very first post about finding out you have the disease, the who, what, when, where and how tend to fade into the background before the fact of being infected with the disease. The question of why remains, but it’s problematic in the extreme to try to come to an answer to that one.

If you believe in an entity or mechanism or power in the universe that somehow keeps track of and balances positive and negative energies, good and evil or grace and disgrace, you may have an answer to they question of why within your belief system. I do not believe in a universal balancing mechanism aside from one that keeps the second law of thermodynamics by conserving energy. I do not pretend to know what is going on at the level of why our universe(s) is the way it is. Most of the models that physicists use to attempt to capture the functioning of the universe have multiple dimensions in them that are beyond are ability as human animals to comprehend directly. Something must be going on in those dimensions; maybe there is some sort of explanation there, maybe not. If anything, I personally believe in a cosmology based on Teilhard de Chardin’s idea that the increasing complexification of consciousness eventually will result in the creation of god. But we are not there yet.

Regardless of the answers you may find for the 6 questions, you are eventually left with only the fact that you have the disease. This fact has a number of consequences. The disease will likely progress in the severity of damage it does to your liver. This may mean you will get cirrhosis and need a new liver. You may or may not qualify for a transplant. Even if you get one, it may not “fix” the disease. The disease may also cause liver cancer. If so, you can also try for a transplant and have a reasonably high survival rate. If you don’t get a transplant, you will likely die within five years. One of the effects that the fact of having Hepatitis C brings home in a remarkably clear way is that we all have an expiration date.

To put the date off a bit, you can chose to fight the disease, but there are no guarantees that treatments either inside or outside traditional western medicine will effectively clear the virus from your body. Methods to manage the symptoms of the disease and attempt to attack the virus that are available outside the traditional medical establishment can run up significant costs in both time and money. Acupuncture, massage, herbal supplements and nutritional consultations are not inexpensive especially when considered over a period of years. There is also no guarantee that they will prevent the progression of the disease. Treatments through traditional medical regimens are both monetarily costly (though this can be mitigated by insurance, participation in research trials, or compassionate use protocols) and physically costly. To many, the treatment is difficult enough that they either cannot complete it or never start it at all. There is also at this point only about a 50-50 chance that the treatment will clear the virus from your body if you have the most common North American genotype of 1a.

Another corollary of the fact that you have Hep C is that you are now someone who can be a hazard to other people. It is certainly at a small level if you are careful how you interact physically with people, but it is a fact. The idea that you are capable of giving someone else this disease just by exchanging a tiny amount of blood is a sobering fact.

Here are my facts: I have the disease. It has gone symptomatic. It affects my quality of life. I have reduced concentration, forgetfulness, depression and fatigue. I can choose symptom management and non-traditional methods to attack the virus. I can choose to attack it aggressively with the methods developed by medical research. I personally chose to attack it with an experimental drug therapy regimen. So far it has bought me about 16 weeks of relatively virus free time for my liver and the knowledge that I can handle the rigors of the treatment regimen. Whether or not I continue on treatment in this study, I will continue to attack the disease aggressively using conventional medical protocols. My wife tells me that I can be very determined when I get my back up over something. I certainly hope she is right.

A final fact that millions of people with this and other communicable, serious diseases have discovered is that having this sort of disease changes your image of yourself at a fundamental level. It has certainly changed mine.

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…

Restless Sleep

I wrote a couple of postings ago about being prescribed trazadone for insomnia. It is an anti-depressant that is also prescribed as a sedative. You can take 50 up to 100 mg per dose if you use it as a sedative and I definitely have to take the higher dose. It does work. There is one side effect that can be a bit aggravating especially as it intensifies a characteristic I’ve had all my life.

I have restless feet, and legs and hands. I have had this all my life. I am sure that if I were growing up today, I would be diagnosed as hyperactive or ADD or whatever the current fashionable term is. When I was about 14 my younger brother was diagnosed with ADD by the family doctor. When he asked my mother if she hadn’t noticed that he was a bit over-energetic and hard to control, she said, “Oh no, I have another one just like him at home.” Whenever I sit down, my feet are tapping, or my knees are jiggling and it goes on 24 hours a day.

I did not know that I did it at night until I was 18. Three high school buddies and I drove to Mexico City from Minneapolis to visit one of the guy’s uncles. That is an innocuous sounding statement until you realize that it is about 2500 miles, 4 guys in one car, driving straight through until we got there. We were young…

The first night we were in Mexico City, we were all bunked in one large room. The next morning, my three friends looked bleary-eyed and haggard. They had been awakened all night long by the sound of my feet rubbing together under the sheets. They thought it might be mice or bugs and it was not for several hours that they traced the noise to my feet. They could not believe that I could sleep through the noise I was making. I was exiled to a small room next door for the duration of our visit.

Trazadone makes my legs jumpy. It doesn’t happen till about 30 minutes after I take it, then it sets in. There is a strange feeling of tension build up in my leg and then it twitches sharply. This goes on until I fall asleep. When I took 50 mg, the jumpy leg defeated the sedative, but when I went to 100 mg. the sedative effect put me to sleep despite the twitching. Luckily for me, and more notably my wife, the twitching subsides shortly after I fall asleep and reverts back to my normal foot rubbing. I can usually get a reasonable night’s sleep after taking it without feeling logy in the morning.

One small, twitchy, step against side effects, one great leap for enduring treatment…

The Flip Side Of The Diet…

I woke up this past Saturday morning and felt…good. There was no trace of nausea, just a normal sense of tiredness and sloth. I got up, walked around, got dressed and still no feeling of nausea. It had become so common to have a background (and sometimes all-to-foreground) feeling of nausea that not having it was amazing. This was especially true given that the previous few days had seen some serious bouts of having to work at keeping my stomach contents inside my body. It was truly delightful to have my stomach feel normal.

So I started eating, and eating, and eating. I can’t eat much at any one time any more, so I grazed as much as I could all day long. It’s not that the food tasted a whole lot better, though I definitely tried to focus on foods that appealed to me, it was that I realized I had a chance to make up for the past few days when food had been the farthest thing from my mind. Even with all the eating, it wasn’t as if I managed to put away thousands of calories. I had a fruit smoothie for breakfast, some nuts, some cheese, a couple of fruit granola bars, two slices of pizza for dinner and the one attempt to pack on the calories, half of an éclair. Nonetheless I felt stuffed all day long, not unpleasantly so, just unusually so.

What I learned from this is that when you have a day when the old digestive tract feels like it did before you started treatment, take advantage of it. You need to eat to maintain your health and you probably need to eat more than you are actually eating. You are mostly going to feel like eating is a chore after several months of treatment. So when you can eat without the negative side effects raising their ugly heads, you owe it to your health to do so.

As a final note, the various books, articles and advice columns about Hep C all mention the benefits of a varied, balanced and nutritious diet. They are right and trying to eat that way is a good way to deal with the disease and the treatment. However, when food tastes terrible and your body doesn’t want to eat anyway, it doesn’t matter if the food is “good for you,” it only matters that you eat something. So eat what tastes good, eat what appeals to you. When you reach the point where the food tastes like crap and your stomach is jumping, eating at all is more important than eating particular foods. If you like it, eat it. If you can keep it down, eat more of it. That is the reality of Hep C cuisine.

Welcome to: The Everything Tastes Like Crap Diet

Most everyone has had a time in their life when they wanted to lose a bit of weight. Anyone who has ever decided to lose some weight faces the sad fact that losing weight is both a simple process and a very difficult one. There are three ways to lose weight. Eat less and be more physically active is the best and most successful way. Then there is the option of eating the same amount of food but increasing the physical activity. This method is slower, but still successful. The third way to lose weight is to eat less and have about the same level of physical activity. This is the slowest, but still you eventually lose weight.

If none of these simple yet difficult methods appeal to you, there are many dieting options available. The Grapefruit Diet, The Water Diet, The No Carbs Diet, The Take Two of These Pills and Don’t Eat After Eight P.M. Diet, and the many programs that offer you the opportunity to pay them for both food that they prepare and for support during the process of only eating their food. Maybe these diets work and maybe they don’t. I, on the other hand, can offer you a guaranteed method to lose weight over a 6-12 month time period. The interferon and ribavirin diet. You could call it the Hep C Diet, the I & R Diet or even the Treatment Diet but the most accurate title is indeed “The Everything Tastes Like Crap Diet.”

The problem with the 3 most effective ways to lose weight and, for that matter, the popular diets as well, is that you still miss food. You still want to eat. You sit around between meals distracting yourself from the fact that you are hungry and still want more food. Well, the TETLCD solves that problem. After you have been on the plan long enough (which is generally only 6-8 weeks) the last thing you want to do is eat.

How does the TETLCD achieve this miraculous transformation, you ask. Well, there are actually two separate methods the diet uses. The first is that the TETLCD removes all taste from 80% of the foods you used to love. Ice Cream – tastes like cold, sweet Styrofoam; Mexican Food – the beans and tortillas taste like cardboard with the flavor removed; Sandwiches – the taste and texture of the bread actually causes you throat to close; Salad – the lovely tomatoes and avocados and lettuce look enticing but then the smell of the French dressing makes you nauseous. Speaking of nausea, that is the 2nd secret weapon of the diet. You can feel nauseous for hours at a time and boy is there anything less appealing than food when you are desperately trying to keep your gorge from rising, I think not. This two-pronged approach is the secret of the success of the TETLCD. Just ask anyone you know who has been on it.

While I could cite numerous testimonials as to the effectiveness of the diet, most of the folks who have had the opportunity to experience TETLCD are trying so hard to blot the experience from their minds that they, mostly politely, refused to discuss the diet. That leaves it up to me to offer my testimonial. I am only 19 weeks into the full 48-week TETLCD program and I have already lost 16 pounds. Just think, by the end of the program, I could be a shadow of my former self - literally.

So, while I don’t recommend contracting Hep C just to get on the program, for those of you in the midst of it or considering it, the steel-gray lining to undergoing treatment is that you will lose that extra weight. You might also lose weight you can’t afford to lose, but most dieters have no sympathy for those folks anyway.

Happy Dieting!

Week 18 – On A More Personal Note…

Yesterday I passed on the news about the expansion of the RO5024048 combination drug trial. Today I’ll pass on the personal news about my condition.

They did all the usual blood draws (only 14 vials this time), and various vitals but no EKG. I didn’t notice that they were not doing it and therefore never asked why it did not happen. When they checked my weight, it turned out I have lost 12 pounds in the last 8 weeks. I had noticed my belt being a bit loose, but I didn’t think I had lost that much weight. I don’t have the energy to exercise heavily so I guess I am eating less than I think.

I’m still undetectable as of week 14 (which was 4 weeks ago) which is the best news of the day. 8 official weeks of no detectable virus levels is encouraging and definitely helps during the various bouts of side effects. About 3 weeks ago they dropped my Copegus dose to 1000mg from 1200mg per day. My Hemoglobin has popped up very slightly but I am still down 35% over normal. The only new development with the shortness of breath associated with the anemia is that now I occasional get out of breath while talking. Thankfully it only tends to happen when I have to project a bit to be heard in a noisy room or in a large group, the usual day-to-day nattering is unaffected (to the occasional chagrin of those subjected to it). White blood cells are low but just above the cutoff line.

About 3 weeks ago, my neutrophil count increased enough that they restored me to a full dose (180mg) of Pegasys from the 3/4 dose (135 mg) that I had been on for about 6 weeks. This brought back a whole raft of side effects that had moderated during the lower dose of interferon. Headaches, rash with itching (thankfully mild), nausea and more intense insomnia all were once again daily, or at least several times weekly, features of life. I had actually thought that my body had begun to acclimate to the treatment drugs, but with the return of all of these side effects, I believe the lower occurrence was due to the lower dose.

I have been having bouts of insomnia for several weeks and given that they have increased with the increase in my interferon dose, the consulting doctor to the study decided to proscribe trazodone to help me sleep. I have taken it twice and while on the first night it did not seem to help at all, the second night found it working better and I think I got a decent night’s sleep. I will report back on the results in the future.

As for reports, taking acetaminophen instead of ibuprofen, just before my Pegasys (interferon) injection has had no effect on my fatigue in the 24-36 hours after the injection. I feel just as crappy taking Tylenol as I do taking Motrin, so much for the miracles of modern pharmacology.

Time to head out the door to the support group. Best of all, I can listen to the Giants game on the way there and maybe on the way back…if I don’t forget they’re playing before I get to the car.

New Developments in Roche RO5024048 Combination Treatment Drug Trial

I went in last Friday for my week 18 tests. Before we started the usual blood draws, EKG and vital signs routine, there was a new development. There is a change to the study protocols that required signing a new consent form. There had been a previous, minor, change that necessitated my signing a one-sheet addendum to the original consent form, but this change involved major changes and resulted in my having to agree to changes throughout the agreement. The new protocol is very good news for the safety of the drug and offers an additional chance for study under-responders.

What is happening is that Roche is adding another treatment arm to the study. In this arm “The safety and efficacy of open-label HCV polymerase inhibitor Prodrug (RO5024048) in combination with PEG-INF and RBV in the subset of patients who only received currently approved combination of SOC in the main study and who did not demonstrate an early virologic response (Treatment Failures) will be evaluated.” What this means is that the people in the arm of the study that received the SOC (pegylated interferon and ribavirin) and did not receive the experimental drug and who did not have a log 210 reduction in virus after 12 weeks or who had virus still in the blood after 24 weeks and thus had to stop taking all medications will get a shot at receiving the full triple-drug therapy.

The new arm (Group F) will take RO5024048 1000mg twice daily for 24 weeks in combination with the SOC of weekly Pegasys (interferon) and daily Copegus (ribavirin), followed by an additional 24 weeks of the SOC (Pegasys and Copegus). The study will be open-label meaning patients and doctors will know the medications they are receiving.

The best aspect of this new arm being added to the study is that the folks who were in the placebo arm of the original study and did not respond, now have a shot at getting a drug whose initial results against the HCV virus are very positive. One of the problems with experimental studies, particularly early stage studies, is that there is always an arm of the study that does not receive the experimental drug and thus you are potentially both entering a difficult treatment process and giving up your treatment-naïve status and not getting anything but the treatment you would have received outside of the study. Here, even the folks in the placebo arm who did not respond, will get a chance to attack their Hep C with cutting-edge treatment.

The other positive news is that the safety issues they were testing for regarding possible kidney damage have shown themselves to be of lesser importance. One of the reasons they are adding this arm to the study, I was told by my research coordinator, was that the kidney problems were not showing up in the test subjects so far in the study. That is one of the reasons that the length of treatment in the Group F arm will be extended to 24 weeks from the 12 weeks of treatment the rest of the study arms received. The researchers believe they can give the drug for longer periods without undue fear of kidney damage.

There is another potential development in the study as well. There is a petition in front of the study governors to allow test subjects in the low dose arm (Group A) of the study who had rebounds in their HCV Viral Load amounts to join the Group F arm as well. Group A received 500mg of RO5024048 twice a day, the other arms receiving the experimental drug either received higher doses (1000mg twice daily) or a more concentrated dose (1000mg once daily). There is apparently some thought that the dose in Group A might not have been powerful enough to have the desired effect on the virus and that by including those patients in Group F, they would find out if a higher dose had the desired effect even on people who had been already treated with the RO5024048.

The developments in the trial seem all to the positive to me. People who did not respond to the SOC placebo treatment, get a chance to actually receive the experimental triple-drug therapy, the kidney damage issues seem to be less of a concern than originally thought and finally even those who did not respond to a low dose of the drug might get a chance to see if a high dose can smack down their Hep C.

Avoid Being a Ralph Star on the Job

Rules for managing nausea at work:

1. Recognize when those waves of nausea you occasionally feel become more insistent.
2. Make sure the rest room is available and not in use.
3. Move quickly to the rest room when needed.
4. Make sure the rest room has a solid, thick door and is not one of those hollow pocket doors or, even worse, a jalousie style door.
5. Attempt to void your digestive tract in as quiet a manner as possible.
6. Clean all affected areas thoroughly.
7. Attempt to return to your work area discreetly.


I think I managed to follow rules 2, 3 and 6 pretty well; the others not so much. It was last Friday afternoon and I suspect that it all happened the way it did because it had not happened before. I have been remarkably free of the truly vicious nausea that afflicts many people on Hep C treatment. I get waves of it from time to time, but usually by drinking some water, getting up and walking around and doing some controlled breathing, I have been able to manage it. On Friday, things were different.

In mid-afternoon I began to have some waves of nausea. I used my usual tactics to try to manage them, but they didn’t really go away. I felt them get stronger and realized that this might require a trip to the toilet. Then I began to cough (as you sometimes do during these delightful events) and realized it was game on. I ran to the bathroom. As an aside, I work on a mezzanine with a small bathroom close by. Unfortunately because of the design, the bathroom has a hollow pocket door that slides closed. As I ran into the room, I slid the door closed (or as it turned out, almost closed). I then began to noisily lose my stomach contents. It was over quickly enough and after pulling myself together and cleaning up a bit, I walked out of the bathroom. To see my boss standing there with a concerned look on his face as he asked me if I were going to live.

It turns out that because of the flimsy nature of the door and the fact that it did not close completely as I rushed in, it was quite clear throughout the building that someone was having digestive problems. Luckily it was late enough in the afternoon that there were only my boss, one coworker and one volunteer left in the building. If it had all happened about a half-hour earlier, I might have had a crowd of concerned volunteers waiting for me outside the bathroom wondering if my internal organs were still internal.

It’s not exactly that it is embarrassing to have this happen, it’s more that I like to be somewhat discreet and not subject everyone in the building to my health issues. I don’t hide the fact that I have Hep C, but I don’t advertise either the fact that I have it or the fact that I am undergoing treatment. It is just something that doesn’t need to be rubbed in everyone’s face. No doubt an artifact of my Minnesota upbringing.

But it did lead me to formulate the 7 simple rules for avoiding becoming a center of attention at work. So take it for what it’s worth. To be a star or not to be a star, aye, there’s the rub.

Suddenly Being Sleepy

A new version of an old side effect surfaced during my recent stay in Los Angeles. Fatigue is one of the more common side effects of Hep C Treatment and I have been experiencing it in mild and severe forms since beginning the treatment study. It has generally built up during the day and peaked in the afternoon at which time I have to lay down and take a nap or I have a hard time functioning mentally or physically. What I noticed over the weekend was that the fatigue started to come on very suddenly. One moment I was functioning more or less normally with my usual moderate level of energy and attention. Over just a few minutes I would be yawning uncontrollably and have a strong need to sit down or lie down. I just didn’t have the energy to sit up and pay attention much less walk around and function normally. This could happen in the early afternoon, mid afternoon or late afternoon and did not seem to directly relate to the intensity of the activity that had been occurring.

This is not something that has been occurring up to now and presents a new challenge for managing the treatment and the side effects. It is going to be a bit more difficult to plan activities if I do not know when I am going to become tired or how suddenly the fatigue will be coming on. This is not a welcome development, to say the least, and I am not sure what it is related to.

I recently resumed injecting a full dose of interferon. Since that time, I have noticed the return of two symptoms that occurred earlier in the study but had since disappeared. I have a mild rash on various parts of my body, mostly the arms and legs, which itches. The itching is not severe and I can usually ignore it. I also have headaches that I tend to feel mostly behind the eyes. I had both of these symptoms in the first several weeks of the study and I had thought that their gradual disappearance was my body acclimating to the interferon and ribavirin. About 6 weeks into the study my neutrophil count and lymphocyte count had dropped to the point that my dose of interferon was reduced to 135 mcg. from 185 mcg. It occurs to me now, that the disappearance of those symptoms corresponded to the reduction in dosage and perhaps that was the reason for the disappearance as opposed to becoming acclimated to the drugs. If so, now that I am back on a full dose I my have a more complete menu of side effects to look forward to for the duration of the treatment.

It also makes me wonder if the new, more sudden, onset of fatigue is related to the increased interferon dose. Since fatigue is a known side effect of the drug, and the longer you take interferon, the more you feel the side effects, perhaps this is also caused by the return to a full dose of interferon.

I am also going to start taking more acetaminophen (Tylenol) with the interferon. I had been told by a lot of people that taking acetaminophen before injecting helped relieve the pain associated with the injection site and generally in the limb that you injected. I usually take ibuprophen instead as I have never experienced much of a pain relief effect from acetaminophen. In doing further reading, it has been reported that taking acetaminophen at the time of the injection can help relieve the fatigue associated with interferon, especially the fatigue that occurs 24-36 hours after the injection. I will definitely try it with my injection this Thursday and report my results. I hope it works; I am definitely tired of being sleepy, especially on short notice.

Hepatitis C and Fantasy Baseball: The Auction

I spent the last 5 days in (mostly) sunny Los Angeles. I was there for my fantasy baseball auction. This is an event in which grown men (mostly) pretend they are baseball general managers and buy a team of actual major league players. This becomes “your” team and you use the actual statistics they accumulate during the year to determine who wins your league.

I have been doing this for 25 years and have gathered a certain level of experience at it as well as a number of beliefs about how best to proceed at the actual process of buying players and assembling a team. A great deal of this accumulated wisdom (a tricky term to apply to this sort of experience, but there it is) had to be thrown out for this auction as the facts of Hepatitis C treatment intruded on the natural rhythms of the fantasy world.

The auction started at 9:00 a.m. on Saturday. I generally inject Interferon on Thursday night. I have determined that the side effects of the Interferon, both mental and physical generally start to hit about 14 to18 hours after the injection. They peak in the 36 to 48 hour period and then gradually lessen until the next injection. I delayed my injection until Friday night around 10:00 p.m. This would mean that the side effects would most likely start to hit from noon till 4:00 p.m. Saturday, I would have a solid 3 hours and possibly as many as 6 before I lost my edge, such as it is. I also realized I had to create a strategy that allowed me to buy most of my players before I started to feel physically sick and mentally spaced out.

One of the tenets of auction theory is that people involved in the auction tend to get caught up in the emotional intensity of the moment and pay too much early in the process. As the auction proceeds and people run out of money, bargains can be had if you are patient enough and a canny judge of talent. This requires concentration and attention over a several hour process. Hah! I say. The side effects timing I mentioned above make that kind of long term concentration impossible, at least for this particular patient. The strategy I devised was to choose actual players that I wanted on my team and buy them in the auction no matter what the price. I made educated guesses as to how much all the available players would be expected to cost. Within those general guidelines, I chose players that would fit my budget and help my team. I went to the auction intending to buy mostly those players and thus I would not have to concentrate on every player just the ones I intended to buy.

It worked far better than I expected. I needed to buy 15 players to fill out my team. I managed to buy 12 of the players I had picked before the auction. I only had to fill 3 positions from the general group of players. The down side to this success is that I have no one to blame but myself if my team is awful.

I was a good thing it worked because, like clockwork, the nausea hit at about 1:30 and I really noticed my concentration lagging from about 2:00 p.m. on. By the time 3:00 p.m. rolled around and the auction was over, I was spent.

This is all really just an example for any specific event or activity that you do while you are undergoing treatment. Successfully completing activities, classes, or special events and occasions is all about planning. Determine what your own body and mind are capable of for given days and time frames and plan your involvement with activities around those capabilities. If it means that you change the way you normally or traditionally do things, make those changes. It will mean all the difference in your enjoyment of the activity or event and your success in completing it. You are the only one who knows what your capabilities are and you are the one who needs to both plan for those capabilities and let others know what they are. This way, no one is surprised and/or disappointed by the level of involvement you can bring to an event.

By the way, the 2010 Black Shadows team is:

John Baker C Florida
Miguel Olivo C Colorado
Adam LaRoche 1B Arizona
Brandon Phillips 2B Cincinnati
Ryan Theriot SS Chicago
Freddy Sanchez 2B San Francisco
Mark DeRosa 3B San Francisco
Jeff Baker 3B Chicago
Jay Bruce OF Cincinnati
Shane Victorino OF Philadelphia
Conor Jackson OF Arizona
Marlon Byrd OF Chicago
Garret Jones OF Pittsburgh
Scott Hairston OF San Diego

Wandy Rodriguez SP Houston
Barry Zito SP San Francisco
Aaron Harang SP Cincinnati
Brett Myers SP Houston
Tedd Lilly SP Chicago
Paul Maholm SP Pittsburgh
Chris Volstad SP Florida
David Bush SP Milwaukee
Jeremy Affeldt RP San Francisco
Sean Gallagher RP San Diego
Sam Gervacio RP Houston

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…

Staying Hydrated or The Water Dance

One of the simplest, most straightforward ways to try to moderate some of the effects of the drugs you take to treat your Hepatitis C is to drink a lot of water and stay hydrated. There are many recommendations as to the amount of water you should try to drink every day, but one of the most common recommendations is to drink ½ ounce of water for every one pound of your body weight. This is a simple, easy to remember formula that you can use to figure your optimal water consumption. Easy to figure; yes; easy to actually do every day, not so much.

I offer myself as an example. I am currently about 185 pounds. Since I get weighed every single time I show up for testing, I am a lot more aware of my weight right now, than I usually am. If you divide my weight by 2, you get 92.5 which is the number of ounces of water that I should drink every day to feel my best. Ninety-two and one half ounces is almost 3 quarts of water per day. That is almost twelve 8-ounce glasses of water, eight 12-ounce cans of soda or six 16-ounce bottles of water. That’s a lot of water to drink every day. The advice about drinking water also includes the warning that it is probably not a great idea to drink much water after about 8 p.m. or you have the chance to be up several times at night to go to the bathroom.

I get up every day around 6:30 a.m. I stumble downstairs, put a kettle of water on the stove and make a cup of green tea (about 8 ounces). I drink green tea because it is about the only way I can have any caffeine any more without completely turning in to a jittery wreck. I need caffeine, at least at the crack of dawn, because I am NOT a morning person and in order to communicate at even the most rudimentary level, I have to have a little. Then I read the paper, dress, eat a bit of breakfast, make my lunch and head out the door. By a touch after 8:00 a.m. I am at work.

This means that I have 12 hours to hydrate myself before I have to stop to avoid endless nighttime bathroom trips. So I have about 90 ounces of fluid to drink over the next 12 hours, about 8 ounces an hour on average. That’s a lot of water and a lot of times to remember to drink some. It’s easy to work for a few hours straight and forget to drink anything and then drink a lot and then repeat the behavior throughout the day.

This seems not so much a big deal until you consider two things. The first is that I have been given through the magic of heredity, the gift of a smaller than normal bladder (thanks mom). Ever since I was a little kid, I have had to use the bathroom more than the normal person. The second consideration is that I am a male over 50 years old. This is known as the enlarged prostate demographic. So I have a somewhat enlarged prostate pressing against my somewhat smaller than normal bladder. This results in a somewhat greater than normal number of visits to the bathroom throughout the day. Actually this means that if I drink the recommended amount of water every day, I am visiting the bathroom every hour on the hour.

On the bright side, you get to see a lot of co-workers regularly, and, if I bring my cup with me to the bathroom, I can drink a nice glass of water on the way out the door and both stay hydrated and set up my next visit to the loo. This is all relatively easy to manage on the job. I am in a building, the building has a bathroom, I visit the bathroom as needed. Outside of work it is not so easy. If I drink the recommended amount of water on the weekend or in the early evening when I am out and about, my recreation is overshadowed by the constant need to find a bathroom. One thing you can say about cities in the USA is that easily available restroom facilities are not high on the priorities of city planners, landscape architects, architects, or city governments.

We are all familiar with the pressing need to relieve oneself and the physical joy of finding that relief. Now imagine that scenario playing out several times a day during a shopping trip, a hiking outing, or a visit to a cultural event. That is what I call the water dance, or more accurately, the making water dance.

Staying hydrated helps your energy, staves off the feelings of nausea and upset stomach and gives your skin that healthy glow that fools people into believing you are healthier than you feel. I will gladly, on occasion, endure all the feelings of nausea or upset stomach if it means I can forget about having to plan my day around the length of time between bathroom visits and planning my daily route around available bathrooms. I’m sure I could go on longer about all this but, you guessed it, I have to go the bathroom. Where is my water glass…

Biopsy Is Just Another Word For Really Big Needle

While drifting through limbo in the late spring of 2009, I decided to get a liver biopsy. A biopsy can be a scary concept for a lot of people. The basic process is to take a big needle and push it into your liver to get a small sample of tissue along the length of your liver. They look at it under a microscope and determine what stage the damage to your liver is at.

I decided to get a biopsy because all the reading I had done about Hep C had indicated that only a biopsy could actually tell you how far the damage to your liver had progressed. Blood tests can show the level of liver enzymes and elevated levels can indicate different levels of damage. Blood tests can be problematic for a number of reasons. You can show very little enzyme elevation even though you have advanced liver disease. Conversely, you can show high levels of liver enzymes (me) and potentially be at an early stage of the disease. Ultrasound and CAT scans can tell the size and external condition of the liver and give some information about fatty deposits and granularity of the liver, but the only way you can actually see what stage the inflammation and scarring are at is to look at the tissue.

I talked to my gastroenterologist about a biopsy and mentioned that it seemed to be the only way to be sure of the condition of my liver and that it would give us a baseline to compare with moving forward. He agreed with that assessment and did a thorough job of going over the procedure and possible complications. The major complication is internal bleeding that can occasionally be difficult to control. Another is the possibility of bile leakage.

The actual procedure was pretty straightforward. It was done on an outpatient basis and took a full morning for the procedure. It was done in a “twilight sleep” state rather than full anesthesia. They prepped me and took me in to the procedure room. My wife was actually able to accompany me all the way to the door of the room, which made her much happier and more relaxed. When they moved me to the table and laid me on my side, the anesthesiologist laid out her syringes. When I saw her lay out 3 syringes of Fentanyl, I realized I was not going to be feeling a thing. Somewhat more at ease, I made the mistake of looking back over my shoulder. Doing so, I saw the doctor removing the biopsy needle assembly from its blister pack. It is the longest needle I have ever seen. I don’t know how long it actually is, but it looked like it was about a foot long and the width of a ten-penny nail. I immediately looked away and made sure not to look in that direction for the remainder of my stay in the procedure room.

They shot me up with all the requisite drugs, rolled me on my side and said, “when you hear a click, it will be over.” I felt absolutely nothing, heard a click a few seconds later and it was over. They taped the wound, rolled me over so that the weight of my body pressed down on the bandage, told me to stay that way and sent me back to recovery. The whole stay in the room for the procedure was about 5 minutes.

They kept me for about 90 minutes to wait out the sedatives and monitor the bleeding from the wound and to determine if they could detect any internal bleeding. Every thing went fine and I went home and slept the rest of the afternoon.

The good news was that the biopsy determined I had stage 1 liver disease. This is the earliest stage with the least damage. Doctor C told me in the follow-up discussion that this result bought me time to consider all my options regarding how to proceed against the Hep C. I was not in any immediate danger with my liver, so I was not under pressure to do something before I was ready. This was exactly what I needed to hear. It gave me the space for a lot of serious research and thought about the possible routes I could take with the disease.

The important part of this whole process was the fact that the liver biopsy is not as traumatic as a lot of folks I have talked to believe it to be. While there are risks as with any medical procedure, the sure knowledge of the state of your liver is a great help in deciding how you want to move forward in dealing with Hep C.

Sitting In Limbo

After not getting in to the Vertex – Telaprevir study in January of 2009 and being thrust into a primary management role in my employer’s reorganization and construction project in early 2009, I ended up in limbo regarding my plans for dealing with Hep C. I was so exhausted from running the project that I did not have the energy and mental focus to make any informed decisions.

One of the good pieces of fallout from not being in the study was getting to meet the team at the California Pacific Medical Center (CPMC) Hepatology Center. The study coordinators are not only intelligent, empathetic people, but they genuinely felt bad about the circumstances of my not qualifying for the study. They knew that the bad test result had been a result of a lab testing glitch and that I was a good candidate for being in a study. So they kept me informed of the various studies that were in the pipeline at their center. I told them that I would not be able to do anything until the summer as I needed time to recover and get the new systems at work up and running. But as soon as May and June arrived, I began to get phone calls about studies. I turned down one that was an early phase 1 trial of another protease inhibitor as it was a short (4 week) trial to determine whether the drug had any efficacy against the Hep C virus. I did not want to do a short course of treatment. When I committed to a program, I wanted to have it be for a full-term course of treatment designed to wipe out the virus. I also did not want to give up my treatment-naïve status unless it was for a serious, later stage study that was trying to determine whether the test drug was good for a cure, not just good for some effect against the drug.

Treatment-naïve means that you have never taken drugs to combat Hepatitis C. This is the state that most researchers look for in test subjects. They want to test their compounds on people whose Hep C virus has never had the chance to react to any attacking drugs. You are only treatment-naïve once. As soon as you have taken drugs to attack your Hep C, whether it be the standard Interferon and Ribavirin therapy or a drug study involving alternate or additional drugs. So, if you are considering entering a medical research trial, you may want to protect your treatment-naïve status until you see a study you like. Of course, if you are in serious later stage liver disease, you take the treatment that sounds best to deal with the situation you have and the hell with preserving treatment-naïve status for the future.

There are also studies for treatment-experienced patients as well. These studies are often somewhat later phase 2 or 3 studies that are trying to determine if the study drug works were other drugs have not. Let’s face it, if you can develop a drug that not only can cure Hep C in treatment-naïve patients, but also can cure the disease in people have tried other treatments and failed, you are looking at a much bigger slice of the treatment money pie. So drug companies all want to know if their drug works where others have failed. There is no need to despair of being able to access experimental therapies just because you have already tried a drug regime and failed. This is a thought that I hold clearly in my head when I think about the possibility of relapsing after the trial ends. I can still go for other options, assuming I want to go through this experience again.

So I was indeed drifting a bit, trying to see if an interesting study came up and indeed thinking about the whole necessity of entering treatment Right Now. As the immortal Jimmy Cliff would have it, I was indeed sitting here in limbo, waiting for the dice to roll.

Ribavirin, You Take My Breath Away.

Friday the 19th I went in for my week 14 tests. I have now been off the RG-7128 aka RO5024048 study meds for two weeks. They took the usual 15 vials of blood. AG, the other study coordinator, told me that one reason she likes Roche studies is that they do a lot of testing for safety. She said they are concerned about certain test results and side effects that some other drug companies view as peripheral. That is some comfort although the constant returns to the lab for retesting and redraws of blood is grinding me down.

The good news is that the Viral Load remains undetectable. It has now been 6 weeks since I went undetectable. This is an excellent result and makes continuing the study easier to do. Having an EVR is a positive sign for obtaining a sustained viral response (SVR) and being declared cleared of the virus (the doctor’s term) or cured of the virus (the drug company’s term).

The bad news is that my hemoglobin is down to 9.9 on their scale. Normal hemoglobin is 12.7 – 17.00, my baseline was 14.8; this means I am now short about 33% or one third of my hemoglobin and boy does it show. I was walking along the waterfront in San Francisco on Sunday with my wife. I was a short walk of about 1 mile round trip. I had to sit down at the halfway point. Even though I know the reason for it, this just drives me crazy. I hate not being able to physically do the things I would normally be able to do easily. Imagine for yourself doing all the things you normally do during a day only doing them with one third less oxygen in your blood. It tends to make you take things quite a bit slower.

I did a Saturday shift at my job a few weeks ago. This involved running a book sale and boxing up the books after the sale. I had some volunteers to help and they did a great job, but I had to do a lot of boxing and lifting. When I got home, I soaked in the tub for an hour or so and went to bed early. While the next day wasn’t bad, the following Monday, I was barely able to stay awake at work and my boss sent me home early because I looked so exhausted it was beginning to depress our (mostly much older than me) volunteers.

All this keeps bringing me back to what I read in one of the Hep C books, “be patient with yourself, you will not have the same capacity you did before starting treatment.” The book has it exactly right. The problem is actually being patient with yourself. If you had any level of energy and drive before starting treatment, the state you find yourself in whilst on treatment will depress the hell out of you.

I had a great conversation about this with my kid sister the other day and she told me to put down the date I will be ending treatment on the calendar, and to plan to celebrate it in some way. She emphasized that it will be over eventually and things will return to normal. Her advice was that prominently noting the date of the end of treatment would reinforce the concept that there is a definite end to the process. I wonder if spray-painting the date across the front of the house might be going too far; maybe a neon sign? Whatever will put the idea firmly in my head that this too will pass is what I want to do.

One last thought comes to mind about all this. There was a closing page article in the latest Liver Health Today about a guy in Texas who is doing very well while on treatment. He is a hemophiliac with HIV and Hep C. He got himself into top shape over the past few years and has been riding in 100-mile bike races. When he started Hep C treatment, he noted that it slowed him down for a few weeks, but that after a few months he was back and the bike and recently rode in a 150-mile race. He attributes his success to being in shape and to his Christianity. I can’t dispute any of this and in fact I applaud him for his dedication and his ability to deal with adversity and challenge. At our support group, the overwhelming feeling was that stories like this are in some ways inspirational but in many other ways depressing. One of our folks did a 72-week stint of treatment and there were times she could barely move around her house, she was so exhausted. Others talked about being thrilled that they could ride a bike for a bit or going to the golf driving range. Not one of all the people I have talked to who have gone through treatment came close to this gentleman’s achievement. So, is it inspirational or is it egotistical to report these sorts of stories. Don’t know, but the vast majority of us are more in the middle of the bell curve and might be able to use a bit encouragement and advice that actually seems possible.

You Give Me Fever

Five days after the last post and I still have the Flu and I still feel like hammered dogshit, as my boss would say.

I guess having a low lymphocyte and neutrophil count can indeed counteract the helpful effects of Flu vaccines. It’s not a terrible case of the Flu as those things go, but as all of us who have had it over the years know, you sure don’t feel like doing much of anything. Add to that the fact that doing much of anything sure does make you feel like going back to bed and you get a lot of days of not much getting done.

And then there is the fact that my job running an online store means that every day there are orders to fill and inventory to track means that I am probably working at least a few hours every day and then I get too tired to think and go home. So at the end of the day, or really in the middle of the day or even at the beginning of the day, I don’t have a lot of worthwhile thoughts about the nature of my condition or the world, or the world of my condition.

So I don’t have much to say right now other than that I am so glad I have a home to recuperate in and a lovely wife to ask me if there is anything I need her to get at the store on the way home. There are a lot of folks dealing with all this same stuff who don’t have the same level of support and if you know someone like that, take some time out and do what you can.

Good Days and Bad Days

Before I started treatment for Hep C, I did not give a lot of thought to Good days and Bad days. I certainly had good and bad days and they were straightforward to identify. Fight with my wife, Bad day. Finish a piece of art, Good day. Stuck on the bridge because of an accident, Bay day, the two starting pitchers on my fantasy baseball team that day both win and throw shutouts, Good day, etc. etc. But the majority of days were just days, some good elements, some bad elements, a lot of generic, average elements. That all changed with the onset of treatment.

Much of the advice that you get about how to approach treatment, how to manage it and how to respond to it, involves not letting it take over your life. You have to continue to live your life as much as possible, that is why you are undergoing treatment, to have your life be about your life and not about your disease. But invasive drug therapy for any disease for which it is required, has a way of making that difficult. Some therapies are periodic and regular. You go in for chemo once a week, or radiation for a few times a week for a month, in other words, a regular defined pattern of treatment. With Hep C, it is a defined treatment regimen, but there is both a daily and a weekly portion of the regimen and the total treatment generally is a minimum of 48 weeks. The weekly interferon injections build up over time to eventually give you a high constant serum level of interferon and the daily Ribavirin keeps that drug at a steady serum level as well. This creates a situation that gives you a constant set of side effects that do not fluctuate in the same way as someone who gets a chemo dose once a week. The side effects may vary individually on a daily basis, but the fact that you will be feeling side effects every single day is constant throughout the length of the treatment.

So you get attuned very quickly to Good days and Bay days. Nausea and dyspepsia, Bad day; Walking up stairs without gasping at the top, Good day; Feeling some energy and enthusiasm, good day; realizing that you said a total of 10 words to your co-workers over the course of the day, bad day – these things become signposts of your days and can easily begin to take over how you feel about your life. You can find yourself sitting inside at home instead of getting outside for a walk or talking to a neighbor or calling your sister or any of the vast number of things that can keep you connected to your life.

A Bad day with the treatment does not a Bad day make. You can have nausea and cramps for most of the day and have a wonderful conversation with an old friend in the evening that makes any day a Good day. You can feel exhausted and breathless and then pick up some take-out food and a movie and have a wonderful night with your family and have a Great day. You can also screw up a day when you are feeling physically good and mentally sharp by having a verbal dustup with a coworker.

This is all very uplifting and such, but the reason I am musing about this is that having the flu on top of Hep C treatment, is a Bad day. And the Bad day lasts several days. I have spent whole days inside the house on weekends when I was dealing with interferon doses but at least felt like I could leave the house. I felt that it was somehow my choice that I was a hermit, that I could get out if I had enough juice, a good reason. When you have the Flu, you don’t really go out unless there is not choice. I don’t want to be the typhoid guy who infects everyone so I don’t go out. This drives me crazy in normal flu years, but given the fact that exhaustion from the Hep C treatment has given me more days in the house than normal this winter and it really feels like a run of Bad days.

But hey, I am about to send an email to an old friend about visiting on Easter weekend, and I will be calling my mother after that. I am trying not to have my life defined by my treatment, but it can certainly creep up on you quickly if you let down your guard.

When baseball season starts, that will solve everything (really, everything). How bad can a day be when there are box scores to read and games to listen to on the radio? The baseball diamond can be a strange place to see a pattern to the universe, but it’s as good a place as any.

Up, Down, All Around

There are ups and downs to this research regimen. Yesterday, I went in for my 12-week tests. I am finishing the experimental drug tomorrow. They needed to determine how fast the drug disseminates into the bloodstream, so the time of the testing was controlled so that they could take blood samples at specific times after I had taken my dose of the meds. None of this is a particularly big deal, it just means a bit more time and a few more questions to answer. It is interesting to note that, despite the attempts to make these tests consistent and rigorous, the human error factor rears its head from time to time. In previous visits, they have forgotten to take my weight, in this test they took my weight, but forgot to take my blood pressure and temperature. I’m sure somebody got a ding for that as they have been quite concerned about the state of my blood pressure throughout the project thus far.

I came in to this visit with a sore throat and told AVB that I had the sore throat, some coughing and nasal stuff. We also discussed the side effects, which ones were decreasing (itching, general cough, irritability) and which were either steady or increasing (fatigue, shortness of breath, muscle weakness). I then went off for the blood draws for this round.

They took 17 vials of blood. The blood guy (who has been drawing my blood for several visits now) estimated that it was from 18-20 ounces of blood. This is roughly the amount that they have been taking since the beginning of the test. So they took about a pint at the start of the test, at weeks one, two, four, eight, ten and twelve or roughly 7 pints of blood in 12 weeks. Despite their claims to the contrary this has to be stressing all my systems. This is a lot of blood to be replacing in normal circumstances, but given that my red cell and white cell producing systems are both being suppressed by the Interferon and Ribavirin as well as some additional white cell suppression by the RO5024048 Polymerase Inhibitor, I can’t believe it is without consequences.

I think I am living them now as the sore throat and developed into a full-blown flu-like outbreak last night and today. Mild fever, productive cough, sore throat, all the delights of flu. Sure I could have developed this anyway, but somehow having over a pint of blood withdrawn just while it was coming on seems like it must have contributed to the onset. Who knows? I did get vaccinated for both strains of flu this year and that has to help, but I think that if the timing of all this were different, I might have a milder case of this. In any case, I’m going to delay my Interferon injection for a day to give my immune system a bit of help before dosing it again with an inhibiting agent.

The good news: Still Undetectable. It is now officially 3 taqman tests showing undetectability. This is great news and I will celebrate accordingly when the flu goes away. Really, I promise.

On the Road Again – Yet Another Retest

My lymphocytes are low again and they brought me in for another retest. They are at 410 and anything under 500 warrants a retest as they are being conservative for the purposes of the study. AVB told me that in standard clinical practice the lymphocytes can drop to 350 before they take action. I wish that were the case as this seemingly constant traipsing back and forth for a couple of vials of blood is tiresome.

I realize the complaint is a hollow one. I am, after all, getting a cutting edge and, to this point, extremely effective new compound to attack my Hep C. But after 11 weeks now of being tired and breathless and fogged in the head, it just starts to get less exciting. Even the fact that a whole new set of health care professionals know me by name begins to lose its charm.

The good news is they gave me my latest (week 10) viral load results and I am still UNDECTECTABLE. 3 straight tests covering 4 weeks of time at that level. Keep it up guys, look under every molecule to find those viruses and kill them. There is no peaceful coexistence with this virus. I want them all dead, even to the bits and pieces. There is some small mental exhilaration in having something I can root wholeheartedly to be destroyed, killed, eradicated and just stomped on. Free your inner barbarian and have it join with the RG-7128 aka RO5024048 and just go out and slaughter.

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.