Night Sweats Redux

After finishing 18 months of treatment involving powerful, side-effect laden drugs one’s expectations are that once you are no longer taking the drugs, you no longer experience the side effects. This does not exactly seem to be the case. Shortly after the first week following the end of treatment, I began to experience night sweats again.

Within a few months of beginning the drug trial in 2010, I started to experience night sweats, as related in this post. The night sweats were intense with heavy sweat soaking through sleeping clothes and even requiring changing the sheets in some cases. These went on for several weeks until my body seemed to adjust to the various drugs and they receded to only an occasional event. This was the norm for about a year until they became a bit more common during the final 8 weeks of treatment. They were still not the heavy sweats that characterized the early part of treatment, but they did happend a few times a month toward the end.

About ten days after finishing treatment, I woke up on my back with a pool of sweat on my concave abdomen (did I mention that I had lost a bit of weight?). After a change of shirt and going back to sleep, I awoke later to the same condition. This happened three times during the night and by morning there were damp shirts hung all over the bedroom. It was unclear why it might be happening. My wife had recently had the flu and I was a bit feverish before retiring for the night so perhaps it was related to that. When it happened each night for the next week, it occurred to me that it might be related to the HEP C treatment. The heavy sweats have stopped, but in a milder form they have remained an event that occurs about 3 times a week.

It is not clear what the cause is. In my darkest moments, I remember that the symptoms for the onset of acute HEP C are flu-like, including fever, sweating and muscle aches. I felt some of them at the start of this round of sweats but it does not seem likely the sweating would have continued on for several weeks after the other symptoms disappeared. In talking to folks who have had relapses after treatment, they report that they relapse within the first month, which would fit the scenario, but they do not report having symptoms. It could also be related to stopping the other drugs being taken to alleviate the side effects of the standard treatment. Ambien was something I was taking every day for the final 2-3 months of treatment as sleep was not something that came easily or often. Ambien is not something that should be taken daily and even Dr. Sue had been more worried about the addictive nature of that than of any of the other drugs I was taking. There are some withdrawal symptoms that are noted for Ambien, but they do not indicate that they would go on for weeks after stopping. It could be that the long term use of interferon and Ribavirin has reset my internal thermostat. It always ran cold before as witnessed by the pile of covers on my side of the bed every night. Perhaps now it is more like my wife’s internal temperature gauge. She often sleeps covered only by a sheet on nights when I am swathed in blankets.

I hope it is something as benign as my body permanently running warmer than it used to. If nothing else, surviving summers in San Francisco will be easier if running hot, than if constantly cold. Until more evidence is gathered, the jury is out. In the meantime I am busy brainwashing myself that it is NOT because of any recurrence of HEP C.

Back on the Interferon Bandwagon

After a reduced dose of Pegasys two weeks ago and a skipped dose last week, I am back under the hammer, so to speak. The dose reduction was due to my neutrophils being below 500. The study doctors believed my neutrophils would rebound without the interferon pounding down the white blood cells. They were right. The number popped up to 1250 and they put me back on a half dose of Pegasys.

It is amazing how much you can forget in 20 days. While I had a lot going on the past few weeks what with the acclimatization side effects of the antidepressants and the new drugs I was taking because of it, nonetheless the number of interferon related physical symptoms that disappeared without my noting their passing surprises me.

I injected Thursday evening and that night I had night sweats and had to change my t-shirt twice. By Friday late morning/early afternoon I had the mild headache and general crappy feeling in the head that you feel when you are coming down with something. By 5:00 p.m. my muscles started to ache, especially in the butt area (How can you mindlessly watch TV while feeling crappy and sore if you butt is aching?). That night I had a generally stuffy head and by Saturday morning the middle of my back was stiff and cramping. I had my first wave of nausea around noon and I also had a sore spot in my breast but with my general clumsiness of late, it could easily be the result of my running into a door, or wall, or chair, you get the idea.

All of these symptoms had disappeared over the past 20 days. Their disappearance was accompanied by completely forgetting about them. I didn’t really even register the fact that I hadn’t felt nauseous in almost three weeks. That would seem to be the sort of thing that you might take note of.

I think this points up the importance of keeping notes about your general health, side effects and mental state throughout your treatment. It doesn’t have to be elaborate. Just a small notebook wherein you note how you are feeling generally and any unusual or unique effects you are feeling. It really helps to be able to flip through you notes and realize that a particular symptom or side effect or your general state of health and feeling is something that you have experienced before. The interferon really affects your concentration and memory and it is very easy to completely forget about something earlier in the treatment cycle that seemed it would be unforgettable at the time. So make notes and keep records. A little notebook of the history of your treatment can be a great friend to you when something seems to be coming out of nowhere, but actually happened to you in the past.

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…

Getting’ Sweaty

Hep C can certainly play havoc with your laundry schedule. This next piece of information may be revealing a bit more about our home life than my wife is comfortable with, but we generally change our sheets and such on a weekly basis. I know there are some of you out there who change linens on a daily basis. I also know there are some of you out there who change sheets somewhat less than on a weekly basis, some of you (you all know who you are) way less than that. Weekly has always seemed to be a reasonable interval to me.

No doubt that has something to do with my upbringing. My mother did our sheets on a weekly basis. The bed-changing day was a big day. We got to tear everything on our beds apart and drag the sheets down the hall to the bathroom where the laundry chute was. For those of you who never lived in a house with more than one floor or without a basement, a laundry chute is narrow chute running from the top floor down through the house, with doors on all intervening floors, that ends up in basement. Usually there is a box placed beneath it wherein all the laundry thrown down the chute collects and from there is dragged to the laundry room, sorted and washed. You threw your sheets down the chute, stuck your head in after and watched them slide down and end up in the box. When you are six or so, it is a great deal of fun. Sometimes, not that I ever did this of course, a large pile of clothes was left in the chute and an individual climbed into the chute and slid down into the pile of clothes – with a much harder landing than the individual supposed there would be.

Having this weekly event indelibly etched in my mind, my adult life was similarly patterned, except of course when I single and living in a warehouse and had not the motivation to launder bed linens so frequently. That being in the past, my wife and I have comfortably lived with a weekly pattern for some considerable time.

Interferon sure puts the kibosh on all that. Last night was a prime example. I injected in the early evening and we went to bed at our usual time of around 10:30. By midnight I was up and had sweated enough to soak the undershirt I was sleeping in. I changed, hanging the other to dry. By 3:00 I was awake and soaked through again so I changed again, hung again and went back to sleep. Waking at 4:30 to serious dampness again, I changed, hung and went back to bed; a three shirt night. Needless to say the sheets were a bit damp as well, at least on my side of the bed.

This used to happen each and every week a few months ago during the early weeks of treatment. I would change the sheets on Saturday, sweat like a pig that night, change the sheets on Sunday, and lather, rinse, repeat. You get the picture. Every week was a marathon of linen washing, not to mention the sheer number of t-shirts I went through. I haven’t been that intimate with a washing machine since my mother made me “help” her with the laundry when I was a lad.

Luckily all that had calmed down a bit and we were down to only having to change the linens maybe twice weekly. Until this dose. I wish my damn body would just adjust to these meds and give me some sense of consistency. Maybe it has to do with being off the experimental drug? But if I am going to go back to multiple washings and changings per week, we may need to invest in a dryer. Hanging all those sheets to dry every week makes us look like we are operating something more than just a single family home over here.

Really folks, its just me, getting sweaty with my meds, the old-fashioned way. And only 35 more weeks to go – maybe a new washer too…

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.