The Day My Energy Returned

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

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

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

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

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

Sierra Vacation One Year Later

At right about the halfway point in treatment last year, I took a short vacation to Camp Mather near Yosemite. It was a real challenge, particularly regarding side effects and was described in this post. Having actually enjoyed it despite the difficulties, my wife and I decided to do it again this year. It was a vastly different experience.

 Right off the bat, we didn’t need to take refrigerated drugs and the daily dose of pills was down to two (a thyroid pill and Celexa). Remembering last year’s difficulty breathing at altitude, I injected my last dose of Procrit a few days before we left. We then threw enough gear for a two month safari into the back of the pickup (it was a five day vacation – in a cabin) and headed up to Camp Mather.

 The biggest difference was the energy I had this year. Even being off the treatment drugs for only 10 weeks created a noticeable difference. There was a lot less exhaustion – I only needed to take one short nap every day – and I had the energy to do a lot more walking. I even played catch, Frisbee golf and kicked around a soccer ball with my wife during the stay. We even stayed up in the evening and played board games with some of our friends, though I crapped out on the late night wine and ranting sessions that are de rigueur for any vacation. It was wonderful to enjoy physical activities without gasping, nausea and spacing out.

 It’s great to feel some actual progress in recovering from treatment. I even pretend to see my hair growing back (I’m sure those dark hairs weren’t there before, both of them). Of course, after driving back to San Francisco, I went to bed and slept for 12 hours, then took an afternoon nap for two more. I guess I’m not quite yet the physical powerhouse I thought I was.

Writing Checks My Body Can’t Cash

I was tired all weekend and am tired today. It appears that while the old mind thinks that I can work full-time with no problems, the body is more difficult to convince. There are a number of reasons that contribute to this fact.

The first is that 18 months of interferon and Ribavirin just wear down your body. It is hard to understand just how pervasive that effect is until you try to return to your old activities. The body has to get used to the idea that it can do these things again. It also has to continue to rid itself of the toxins built up over the months of treatment.

Another is that the months of treatment that wore down the body also brought about an enormous lack of energy. This created a situation in which it was extremely difficult to exercise. Walking, stairs, lifting and carrying all leave you so exhausted that you have no incentive to keep attempting to be physically active. So the muscle you have left atrophies and leaves you weak as a kitten.

A third is that recovery from the anemia brought on by the Ribavirin is much slower than expected. A month after finishing treatment and even though I have been injecting Procrit weekly, my hemoglobin is only at a little over 11. Given that it was at 15 at the start of this whole shebang, there is still quite a ways to go to get back to normal.

Finally, as I mentioned a bit earlier, I am genuinely weak as a kitten. A week after I stopped treatment, I began to do some light exercise to try to build up my strength and muscle tone. The amount of various exercises that I could (or more accurately, couldn’t) do was astounding. Just to give the most embarrassing example let’s consider lunges. These are the exercise in which you step forward with one leg, drop the opposite knee down until it touches the ground and then straighten up. I could do 3 on each leg or six total. In all the years I have ever done any of these sorts of exercises it was always possible to do 10 on each side or 20 total even when my condition was terrible. The worst part was that after doing the 6 I could do, my legs were stiff the next day. Yes, I just turned 58 and have had a long bout of drugs but still, that’s damn disappointing.

All this contributes to the fact that 5 full time days equals a full time weekend of rest and even then there is not enough time to revive.

Personal Evidence of Cognitive Deficits from Hepatitis C Treatment

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

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

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

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

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

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

Brain Fog x Fatigue = Say What?

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

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

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

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

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

Vacation In The Sierras

Vacationing while on chemotherapy for Hep C has a number of factors to take into consideration even for a short jaunt to the seaside. Adding a few days and several thousand feet of altitude to your relaxing getaway and a whole new set of issues get added to the mix. It is not really that difficult to arrange, but you can count on being sideswiped by an unknown effect or two graciously provided by your medical situation.

I just spent 5 days at Camp Mather in the Sierras of California. Camp Mather is a piece of property owned by the City of San Francisco that is located between Yosemite and Hetch-Hetchy Valley. It was acquired in the early twentieth century through a combination of political hardball, backroom dealing, convenient crafting of legal provisions, and the judicious application of money. It has about 75 cabins, a small lake, a pool, trails, stands of ponderosa pine and incense cedar, tent camping sites, bathhouses and a mess hall. Each cabin has a couple of beds, two plastic chairs, lights and a picnic table. It’s not tent camping, but is rustic enough to be only a step up. It is also at 4500 feet above sea level.

The specifics of the Hep C planning required bringing all three injectable drugs along in a cooler as my dosing schedule occurred during the vacation. I brought along a fully loaded daily drug-dosing carrier that had all my daily meds broken down into morning and evening doses. I also brought the ancillary drugs along in case I couldn’t sleep, became anxious or the pain in my muscles flared up.

The drug dosing all went swimmingly, but the thin air really did me in. The simple act of unloading our stuff out of the car and into the cabin and setting it up, let me gasping and exhausted. Nothing a quick nap didn’t fix, but it certainly caught me off guard. A bit of clear thinking on my part could have predicted this, but hey…
A trip to Glacier Point in Yosemite (one of the most spectacular views of granite domes and glacial valleys that exists in the USA), which is at the 7200-foot level, was even more daunting. As I walked up the slope to the overlook I was constantly being passed by fit, trim, healthy people in their 60s, 70s, and even tough old birds in their 80s. You nod cheerfully, gasp out a hello and plod along.

The thin air also makes keeping properly hydrated something you have to pay particular attention to. You have to drink water constantly to maintain your normal hydration level and stave off nausea and queasiness. Combine this with my walnut sized bladder and enlarged prostate and it’s not a pretty picture. For surviving the nights I have two words: gallon jug.

The third factor is really a combination of the first two. The thin air and tendency towards dehydration leave you even more susceptible to fatigue than usual. Don’t plan on cramming too much activity into your day or you will spend the next day doing nothing but sleeping.

This is not to say I did not have a good time. It was a delightful long weekend. We got together with old friends, met interesting new people, saw places we had never seen before, revisited old favorites and simply lounged around. Even the food was good. I will stand in a cafeteria line any time for turkey dinner, tri-tip steak or spaghetti with meat sauce. The staff and volunteers who keep the place going are great folks.

So by all means head out the mountains whether you are on chemo or not. Just prepare to be surprised by how you body reacts to your brain’s idea of a good time.

Careful Planning Meets Chaos Theory

When Chaos Theory first became widely discussed years ago, there was a quick and dirty example of it that made the rounds: Chaos Theory can be illustrated as your typical day. You wake up in the morning with a certain plan or pattern for your day. You have places to be and tasks that need to be accomplished and you think that they can all fit into your day. Then your day happens.

As you get dressed, your shoelace breaks and you realize you don’t have any spares. You unthread one from another pair of shoes and go to make breakfast. You find that someone has used the last of the ground coffee and you have to grind some. There is no orange juice for your smoothie, so you have to hustle up some English muffins for breakfast. You find that the deli meat and tomato you were going to use for your lunch sandwich are gone and that means you have to buy something for lunch. All this combines to get you out the door a touch late and there is a bus stall on your way to work. You are late to work and that pushes back your first meeting. The meeting runs long. There is not enough time to complete the spreadsheet work you were going to do before you need to check in with the contractor working on the office. Lunch gets pushed back and you have to take additional time to go out and get food. All this shortens your afternoon and you absolutely have to be at little league practice (you’re the coach) or 16 kids will be standing around. Etc, Etc, Etc. By the end of the day, the resemblance to your morning plan may be only a passing one.

The same thing occurs when you attempt to plan your activities around your treatment regimen. Chaos has the same domino-like effect. It ambushed me just two days ago.

I had a fairly heavy day at work, packing and moving many boxes of books, rearranging inventory and working through floor plans for a 400,000-book sale. I felt all right when I got home, but I realized I had pushed it and decided to stay home instead of making a run to my studio. I knew that my wife worked late the next day and I could handle what I needed to do tomorrow evening. At 1:30 a.m. that night however, tired as I was, I was wide awake. I had to get some sleep and broke down and took a Trazadone. I took about an hour to work, so I managed to get 4 hours of sleep and woke up with a logy feeling from the sleeping pill. By the time I got home after work, I went right to bed and slept for 3 hours. I was still tired enough that I went to bed early and slept for 8 hours (as treatment veterans know, 8 hours sleep can be a miracle). I did not even manage to get much done at work much less do any of the small tasks I had hoped to accomplish in the evening. The lack of accomplishment that day affected the next and it is only now that I can plan to get what I wanted to do yesterday done tomorrow evening, if all goes well.

Planning is good, lists are good, notes to yourself to remember that you forget are good, but the best-laid plans can definitely be put paid by a bout of treatment-derived chaos…

Fatigue Vs. Normal Life

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

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

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

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

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

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

Feeling Better On Standard Of Care

Being treated on Standard of Care as opposed to in a drug research trial can make a big difference in your general feeling of health. It allows you to use drugs that directly counteract the characteristics of interferon and Ribavirin that depress your red and white blood cells. The use of Procrit to keep the hemoglobin level up and Neupogen to boost the white blood cell counts can have effects that go beyond the specifics of maintaining minimum levels of blood components.

Having more hemoglobin to carry oxygen around your body can mean a lot less shortness of breath after exertion. It can help your muscles recover faster and mean you can do more before you get that tired, wobbly-legged feeling. It also means that you feel a bit less fatigued overall and perhaps means that you don’t need quite as much nap time during the day to keep you functioning.

With higher white blood cell counts, you are less likely to suffer from minor infections and more able to fight off any illnesses, like cold and flu, that might be going around.

My own experience has been an example. Since beginning to administer Procrit my hemoglobin level is up to 11.4. This is higher than at any time since I began the drug study 33 weeks ago. I have definitely noticed that I am not as fatigued at the end of the day and that I can do more physical work without gasping and breathlessness. The down side is that I am not as exhausted a night which means falling asleep is even harder than normal leading to a bit more insomnia. No good result goes unpunished, I guess.

My neutrophil counts are consistently holding at around 800 since I started on the Neupogen. While I haven’t noticed a direct effect on my energy or mental state, I haven’t gotten sick since then either and I’ll take that result any time.

I am not noticing that either better hemoglobin or white cell counts have increased my ability to concentrate or improved my memory however. You might imagine that a bit more oxygen to the brain would be helping those sorts of things, but in my case you would apparently be wrong.

The other area the extra hemoglobin does help though is in the late-night laps around the house. I can walk a half-mile back and forth easily now before going back to bed and finally falling asleep…

The best laid plans…end up on the couch

I was going to write a bit more about the early months of figuring out my disease today, but then walked home from work today. This involves walking the last ½ mile uphill (and it gets steeper the further you go). So when I walked in the door I was sweating profusely. I took off my sweatshirt and t-shirt, got out a towel and went to the living room to sit for a moment and cool off. Not to mention bring my respiration and pulse rates back down into only double digits again.

The way you cool down at this time of the year is to turn on the television and watch the Olympics. Just moments before I got home, the puck was dropped in the Canada-Russia quarterfinal hockey match and thus, it was being televised when I turned on the set and clicked to the deep end of the cable spectrum.

I was born and raised in Minnesota. I was never a particularly good skater, but that did not stop me from playing hockey every winter from the time I was about 9 years old. We used to flood the backyard and freeze it into a rink. We had an old streetlight on a pole and played hockey until they forced us inside to bed. When we got older, we played at the local parks and on the ponds cleared off the frozen lakes in town. We played on skates and we played something called “boot hockey” with a frozen ball and tennis shoes when we didn’t feel like dealing with all the equipment. We didn’t ski because there were no mountains and skiing was something only the rich kids could afford. Cross-country skiing was the province of the old Norwegian guys that we all thought were crazy. But everyone could play some sort of hockey.

This all is just a pale attempt to explain why I had to watch two of the best teams in the world go at it in the Olympics. And, once the Canadians had thoroughly thrashed the Russians (the first period was one of the most exciting, balls to the wall periods of hockey I can remember seeing in eons), why I am watching the Czechs play in the second game now. Well not exactly now as I am writing this between periods, but you get the point.

The Hep C will be around for a while but the Olympics come once every 4 years. So I will tell you about meeting my gastroenterologist another time and head back down to my comfortable sofa, a tall glass of water and some truly wonderful hockey.

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.

Week 10 Tests and Week 8 Results

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

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

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

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

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

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

Valentine for the Hepcat

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

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

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

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

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

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

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

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.

Ch...Ch...Ch...Changes

A few weeks ago, there was a post from TC who mentioned that they were just starting treatment, had had their first shot and no serious side effects yet. I hope it is still going well for TC and I wonder if they are seeing some changes.

I have noticed that the side effects and general overall feelings of health are very fluid during treatment. I have only been on the therapy for 8 weeks and yet I have had great variation in the range and severity of the effects of the meds on my body and mind.

At the beginning, I had a lot of emotional swings, lots of tears, ups and, more particularly, downs in my mental state and just not being able to predict moment to moment how I was going to feel. 8 weeks later and my emotional state is more stable. It is stable at a lower level, but stable. I am not moved to tears as easily. It still happens, it just takes better songs and movies to do it. I don’t get up and down as much and I am more likely to be able to keep an even keel in my dealings with others.

Why just today, while setting up a booth at the SF Antiquarian Book Fair, I was able to shoo away the aggressive and persistent dealers who insist on trying to root through your stock before you even set it up without blowing up at any of them or banning them from the booth. I would not have been able to have that level of equanimity a few weeks ago. Some of this is due, unfortunately, to having less energy and personal affect than before, but at least it allows for more predictable and reasonable behavior on my part.

For the first several weeks, I always had chest pain for 2 or 3 days after the Interferon injection. It feels, like someone said in one of the books my wife bought, like there has been a football stuffed into your chest. I do not get that much at all anymore and if I do, it is only for a few hours or so.

A couple of weeks into therapy I started to get mild rashes and itching, particularly at night. It was annoying and played hell with my sleep, which is the last thing you need with Hep C. I have not had rashes for 3 or 4 weeks now and the itching is now confined to a bout of intense itching, generally on the tops of my feet, every 10 nights or so. It is really intense and drives your crazy for a while, but I can handle it if it stays at 10-day intervals.

I also noticed that my eyes changed very rapidly during the first 4 weeks of treatment. I have natural monocular vision which means that one eye focuses on close things and the other on things far away. Even though I have glasses (bifocals even) and use them for reading at night and in the morning, I generally did not need them during the day for my normal activities. My left eye, the close focusing one, has lost a great deal of the ability to focus on small print. I now have to wear glasses for a lot of the reading I used to do without them, or suffer headaches from trying to focus. It happened fast enough that they sent me back to the eye doctor to see if anything even more serious was going on (cataracts, macular degeneration, etc). Thankfully, nothing except my losing the ability to read without glasses. It seems I am getting old, according to the cute young eye doctor. Since I am now much more stable and predictable in my emotional states, that momentary feeling of rage at the cute young eye doctor must have been an anomaly.

I also notice that in the past 2 to 3 weeks I get light-headed more easily than I did at the beginning of treatment. I have to be careful about getting up quickly and moving quickly as this triggers the feeling, sometimes quite acutely.

The other noticeable change since the beginning of treatment is in my general energy level and my level of muscle weakness. Both have been trending consistently down since the start. It has happened gradually enough that it took awhile for me to credit the treatment regimen for the effects. It was 4 or 5 weeks after the start that I really noticed the fact that doing something normal like the laundry left my arms tired, or that walking up a flight of stairs with a box of books left my legs burning. None of these sorts of activities bothered me at the beginning of treatment.

Again today, after spending 3 hours setting up the booth, I went home and immediately took a 3 hour nap. I was exhausted. This is an example of my lower general energy level. I cannot move as quickly. I have to do things more deliberately and slowly. I have to pace myself very precisely to make sure I will get the things I need done.

It is interesting that it affects writing these posts as well. One of the reasons I don’t do it everyday (given that sometimes I just don’t have a damn thing interesting or worthwhile to say) is that I get home from work and a bit of shopping and I am just wiped out. The idea of sitting and writing a post just seems like the most challenging thing I can imagine. And the bed, oh yes the bed, it so soft and warm and fluffy. With the nice sheets and my lovely wife and, well no need to wax rhapsodic about the desire to lie down and rest, we all know the joys of that. Speaking of which, the bed is calling to me now and it doesn’t sound like David Bowie either.

Amish Quilts and Nap Time

Yesterday, my wife and I went to see the Amish Quilt show at the DeYoung Museum in San Francisco. What astonishing stuff. The patterns are just striking and the optical illusion 3D patterns are something you can get lost in while looking at them. They use a lot of black backgrounds with vivid primary colors that just make the patterns pop off the quilt at you. I can’t imagine being able to sleep with some of those quilts on your bed though; your eyeballs would never stop vibrating.
Going there did point up another aspect of the Hep C treatment management thing and that is that you have to plan your day pretty carefully and with full awareness of what your energy level is.

It’s not like going to the museum is climbing Half-Dome. We parked a few blocks away, walked on flat ground to the museum, walked around the museum on mostly flat floors and still after an hour of looking at art, it was “let’s head for the café and sit down for a while.”

It’s only been about 7 weeks since I started treatment and my mind still thinks like it did 2 months ago. You go out for an afternoon or evening of socializing thinking full well that you will be going strong for 3 or 4 hours. Then, 90 minutes in to the event, you start searching for a chair, yawning, and getting that dazed and confused feeling that comes with real fatigue.

My wife gets it a lot better than I do. She has been watching me now for months as I discovered the extent of the disease, researched treatment, screened for the study and then started in. She has seen the energy go down, the bags under the eyes get larger (like I really needed that, they looked like sand dunes already), and has watched me gasping after going up a flight of stairs. She is always asking how I feel, if I am tired and do I want to sit down.

Of course I am tired, feel crappy and do want to sit down, but the old Midwestern Catholic upbringing makes me feel like it’s my willpower that is weak, not my body. So I find myself not paying enough attention and then hitting the wall of exhaustion.

As anyone’s wife would say, “If you just listened to me, this wouldn’t happen.” And she is absolutely right. As one of the folks in Living with Hepatitis C by Everson says, “You have to learn to be patient with yourself,” and believe me, that can be very hard to do.

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