When I checked the mailbox on the way home from work today, the envelope with my latest test results was there. The other two envelopes were my paycheck and my wife’s paycheck, but I didn’t register that until later. I wasn’t thinking about money. The only thing I was thinking about was whether those results would show my viral load was undetectable.
In situations like these (preparing to open the envelope bearing important news), you find that you’re still mentally a primitve creature. I’m not a god-botherer, as the Brits would say, but as I walked in the house I was chanting to myself, “Yes, this is it. Please be undetectable. Yes, this is the week. Come on, let’s see undetectable results.” I sat down at the kitchen table (okay, it was the table on the back porch but you get the picture), held the envelope, took a deep breath and opened it up.
My viral load numbers since the viral breakthrough have been: 40.000; 10,000; 5,000; 1,500; 990; 310 and 110 IU/ml. I was really hoping that I would get that final bump down but it didn’t quite happen. The number was 60 IU/ml. Undetectable on this test is 43. It’s been 13 weeks since I went back on full interferon dosing after the breakthrough and I’m not quite there yet. Seventeen of those little bits of viral DNA per milliliter are still hanging on in various nooks and crannies of my bloodstream.
Objectively, this is not the best news. The longer it takes you to reach undetectable levels the lower your percentage of having a sustained viral response at the end of your chemotherapy. But I’m going to keep the same attitude that I had at the beginning of the RO5024048 polymerase inhibitor trial just under ten months ago. Back then I refused to believe that I would not get the test drug and would end up in the placebo arm of the trial. Now, I refuse to believe that I will not be one of the 25% or so who obtain an SVR as slower responders.
I’m not as stubborn as my wife’s Irish ancestry allows her to be, but I have my own stubborn Polish fatalism going for me and I’m going to ride it to the finish. Primitive mentality yes, but it’s the only one I have.
Thursday, September 16, 2010
Tuesday, September 14, 2010
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.
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.
Wednesday, September 8, 2010
It Is Chemotherapy; It Is Not “Treatment.”
The statistics speak for themselves. Over 4,000,000 people are credibly estimated to have Hepatitis C in the USA. The research money devoted to finding a cure for Hepatitis C is about $20 per infected individual. As a counter example, about 500,000 people have HIV/Aids in the USA. The research money devoted to finding a cure for Aids is $2700 per infected individual. You do the math, research money in the USA for Aids: $1,350,000,000; research money in the USA for Hepatitis C: $80,000,000; fourteen times the money for ¼ the total number of patients.
I do not begrudge the money granted to research on AIDS. I do not begrudge the money granted to research cancer or heart disease or tuberculosis or any other life-threatening disease. All these diseases merit serious study. I am interested in why Hep C is so underrepresented in the research funding arena. A few thoughts have been knocking around my head concerning that area.
The closest disease example I can think of to Hep C is HIV. Both groups of people infected by the particular disease are stigmatized to one extent or another. The AIDS community was painted from the very beginning as promiscuous, drug using homosexuals – hard to beat that for a stigma in American society. Hep C has been characterized as a disease of drug users and needle sharers, another big no-no in the USA. Yet after about 3 or 4 years the AIDS community was well organized, aggressive, public and effective in lobbying the drug companies and the FDA. It took a long time and a lot of hard work, but they got a lot of attention, a lot of money and some effective treatments leading to a high rate of long-term survivors. One of the reasons that they were effective was that they were a unified, identifiable community, stigmatized or no, that was able to leverage their movement for gay rights onto the movement for HIV research and treatment. The out of the closet gay community led the way in publicizing the disease and the need for research.
Individuals infected with Hep C are spread across wider segments of society. They are present in larger numbers across various sexual, gender and racial segments of society and a lot of them are still in the closet, as it were, regarding their disease. While there are advocacy groups, support groups, web sites, etc. There is not a tight, vocal, aggressive group lobbying loud and hard for additional funding. We need to have an out of the closet group of Hep C infected being in your face about the situation regarding research and treatment.
Another problem we have is that Hepatitis C patients undergo “treatment” or enter “standard of care” or are in a “study” or are utilizing “alternative therapies.” We need to call a spade a spade here. Hepatitis C is fought using chemotherapy, not “treatment.” Calling it what it truly is magnifies the significance of what people with Hep C are going through. Everyone knows someone who has undergone chemotherapy for breast cancer or colon cancer or leukemia or prostate cancer and they all understand how serious and invasive it is. By referring to Hep C treatment as treatment or Standard of Care or therapy diminishes the seriousness of the disease itself and the regimen used for attacking the virus. We need to stop minimizing it. What we go through is not treatment; it is hard-core chemotherapy with all the attendant problems and side effects.
To use myself as an example once again, I am 9 months into chemotherapy for Hepatitis C. I inject 3 drugs on a weekly basis: Pegasys, Procrit and Neupogen. I take four additional drugs on a daily basis: Ribavirin, Celexa, Levothyroxine and Folic Acid. I take three additional drugs on an as needed basis: Trazadone, Tramadol and Ativan. I am using 10 different drugs to attack the Hep C virus and to manage the side effects of the drugs that are attacking it. If that does not qualify as chemotherapy, what the hell does?
I have side effects ranging from nausea, fatigue, hair loss, muscle pain, joint pain, fevers, rashes, night sweats, low white blood counts, anemia and brain fog (because of the brain fog, I’m sure I have forgotten some of the side effects). If that array of side effects does not indicate I am undergoing chemotherapy, again, what the hell does?
It is time to call what we endure to fight the Hepatitis C virus what it is: Chemotherapy. It is invasive, disruptive and long lasting. In fact Hep C chemo generally lasts for 48 weeks. That is considerably longer than the chemo and radiation regimens for a number of cancers and other diseases. This is a serious process.
Our disease is serious and ultimately fatal, our method of attacking it is a long course of difficult chemotherapy. It does neither our disease, our treatment or ourselves as patients any favors to be less than open about the seriousness of our disease and the long, difficult and exhausting regimen of chemotherapy we undergo to fight it. Let’s do ourselves the justice of calling it what it is.
Thanks for listening to the rant. I am on vacation for the next week and will have more bile when I return...
I do not begrudge the money granted to research on AIDS. I do not begrudge the money granted to research cancer or heart disease or tuberculosis or any other life-threatening disease. All these diseases merit serious study. I am interested in why Hep C is so underrepresented in the research funding arena. A few thoughts have been knocking around my head concerning that area.
The closest disease example I can think of to Hep C is HIV. Both groups of people infected by the particular disease are stigmatized to one extent or another. The AIDS community was painted from the very beginning as promiscuous, drug using homosexuals – hard to beat that for a stigma in American society. Hep C has been characterized as a disease of drug users and needle sharers, another big no-no in the USA. Yet after about 3 or 4 years the AIDS community was well organized, aggressive, public and effective in lobbying the drug companies and the FDA. It took a long time and a lot of hard work, but they got a lot of attention, a lot of money and some effective treatments leading to a high rate of long-term survivors. One of the reasons that they were effective was that they were a unified, identifiable community, stigmatized or no, that was able to leverage their movement for gay rights onto the movement for HIV research and treatment. The out of the closet gay community led the way in publicizing the disease and the need for research.
Individuals infected with Hep C are spread across wider segments of society. They are present in larger numbers across various sexual, gender and racial segments of society and a lot of them are still in the closet, as it were, regarding their disease. While there are advocacy groups, support groups, web sites, etc. There is not a tight, vocal, aggressive group lobbying loud and hard for additional funding. We need to have an out of the closet group of Hep C infected being in your face about the situation regarding research and treatment.
Another problem we have is that Hepatitis C patients undergo “treatment” or enter “standard of care” or are in a “study” or are utilizing “alternative therapies.” We need to call a spade a spade here. Hepatitis C is fought using chemotherapy, not “treatment.” Calling it what it truly is magnifies the significance of what people with Hep C are going through. Everyone knows someone who has undergone chemotherapy for breast cancer or colon cancer or leukemia or prostate cancer and they all understand how serious and invasive it is. By referring to Hep C treatment as treatment or Standard of Care or therapy diminishes the seriousness of the disease itself and the regimen used for attacking the virus. We need to stop minimizing it. What we go through is not treatment; it is hard-core chemotherapy with all the attendant problems and side effects.
To use myself as an example once again, I am 9 months into chemotherapy for Hepatitis C. I inject 3 drugs on a weekly basis: Pegasys, Procrit and Neupogen. I take four additional drugs on a daily basis: Ribavirin, Celexa, Levothyroxine and Folic Acid. I take three additional drugs on an as needed basis: Trazadone, Tramadol and Ativan. I am using 10 different drugs to attack the Hep C virus and to manage the side effects of the drugs that are attacking it. If that does not qualify as chemotherapy, what the hell does?
I have side effects ranging from nausea, fatigue, hair loss, muscle pain, joint pain, fevers, rashes, night sweats, low white blood counts, anemia and brain fog (because of the brain fog, I’m sure I have forgotten some of the side effects). If that array of side effects does not indicate I am undergoing chemotherapy, again, what the hell does?
It is time to call what we endure to fight the Hepatitis C virus what it is: Chemotherapy. It is invasive, disruptive and long lasting. In fact Hep C chemo generally lasts for 48 weeks. That is considerably longer than the chemo and radiation regimens for a number of cancers and other diseases. This is a serious process.
Our disease is serious and ultimately fatal, our method of attacking it is a long course of difficult chemotherapy. It does neither our disease, our treatment or ourselves as patients any favors to be less than open about the seriousness of our disease and the long, difficult and exhausting regimen of chemotherapy we undergo to fight it. Let’s do ourselves the justice of calling it what it is.
Thanks for listening to the rant. I am on vacation for the next week and will have more bile when I return...
Saturday, September 4, 2010
A Nice Soft Belly
It turns out that my status as a research study participant who morphed into a standard of care hepatology patient created a bit of a black hole in my medical records. Since all of my records from the study are confidential the hepatology department discovered that even though I was 12 weeks into treatment, they did not have basic paperwork on me. To solve this problem, they brought me in for a meeting with another nurse practitioner, TL, to gather the necessary data. Unfortunately, they did not tell me why I was meeting with her and thus I left my medical history documents at home.
When I arrived, they handed me a twelve page questionnaire detailing my medical history, most of which I can never remember in normal circumstances much less when my brain is in a fog. It worked out well enough in the end as TL and I went through it together and puzzled out the details. It was reassuring as well that when I recounted the timeline of my study participation, dose reductions and subsequent viral breakthrough, TL was firmly convinced that the dose reductions were indeed the cause of the breakthrough. It is powerful reinforcement to hear another experienced person express the opinion that it was not the intractability of the virus that caused the problem, but rather the variability in dosage dictated by the study protocols. It reinforces my optimism going forward through the rest of the treatment.
TL informed me that the rest of the treatment would total nine additional months after I became undetectable. Given the nine months I have been on meds, it will make a total of 18 months of interferon, ribavirin and the other assorted drugs I am taking. It is going to be an even longer grind than I assumed at the beginning of the process lo those many months ago.
My viral load is down to 110 IU/ml. after twelve weeks and I am hoping to see it go undetectable (under 47 IU/ml.) in my next test on the 10th of September. That would put the end of my treatment in June of 2011 when I turn 58. If it works and I am still undetectable six months after the end of treatment, I will have gone from diagnosed to cleared of the virus in three years. A dream perhaps, but it’s the one I am sticking with.
The meeting ended up with TL adding some additional monthly blood draws to my schedule and a brief physical exam. TL checked my legs for swelling, listened to my lungs, checked for any rashes and then palpated my stomach to check for ascites. “Oh, you have a nice soft belly,” commented TL, “no evidence of fluids at all.”
That is the best medical comment I may have ever received. From this point forward, anyone who comments on what is left of my spare tire is going to be told that my medical team has complimented me on my soft belly and far be it for anyone else to criticize its texture. In fact, I am patting it now as I finish this missive, so soft…
When I arrived, they handed me a twelve page questionnaire detailing my medical history, most of which I can never remember in normal circumstances much less when my brain is in a fog. It worked out well enough in the end as TL and I went through it together and puzzled out the details. It was reassuring as well that when I recounted the timeline of my study participation, dose reductions and subsequent viral breakthrough, TL was firmly convinced that the dose reductions were indeed the cause of the breakthrough. It is powerful reinforcement to hear another experienced person express the opinion that it was not the intractability of the virus that caused the problem, but rather the variability in dosage dictated by the study protocols. It reinforces my optimism going forward through the rest of the treatment.
TL informed me that the rest of the treatment would total nine additional months after I became undetectable. Given the nine months I have been on meds, it will make a total of 18 months of interferon, ribavirin and the other assorted drugs I am taking. It is going to be an even longer grind than I assumed at the beginning of the process lo those many months ago.
My viral load is down to 110 IU/ml. after twelve weeks and I am hoping to see it go undetectable (under 47 IU/ml.) in my next test on the 10th of September. That would put the end of my treatment in June of 2011 when I turn 58. If it works and I am still undetectable six months after the end of treatment, I will have gone from diagnosed to cleared of the virus in three years. A dream perhaps, but it’s the one I am sticking with.
The meeting ended up with TL adding some additional monthly blood draws to my schedule and a brief physical exam. TL checked my legs for swelling, listened to my lungs, checked for any rashes and then palpated my stomach to check for ascites. “Oh, you have a nice soft belly,” commented TL, “no evidence of fluids at all.”
That is the best medical comment I may have ever received. From this point forward, anyone who comments on what is left of my spare tire is going to be told that my medical team has complimented me on my soft belly and far be it for anyone else to criticize its texture. In fact, I am patting it now as I finish this missive, so soft…
Wednesday, September 1, 2010
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…
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…
Monday, August 30, 2010
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…
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…
Friday, August 27, 2010
Normal Life vs. The Brain Fog
The single most difficult aspect of Hepatitis C as a disease and of the treatment for Hep C is the combination of memory loss, concentration loss and cognitive loss known as brain fog. Hep C sufferers consistently comment that it is the most troubling and hard to handle aspect of the disease. Hep C itself has a side effect in many of its victims of varying forms of memory and thinking difficulties and when you combine the effects of the Hep C virus with the side effects of taking interferon you get the syndrome they call interferon brain fog. It affects all aspects of your life to one degree or another.
It goes beyond merely forgetting where your keys are or what the name of a movie you saw in the past is. It extends to trying to remember what you walked into the room to do, what it is you were trying to say a moment ago, what you were going to make absolutely sure you got done today or even what you sat down to write about. Perhaps the most troubling aspect of brain fog is that it can actually make you forget the fact you have brain fog, a classic lose-lose situation.
You forget that you have noticed very particular situations that you made note of in the past with an eye towards either avoiding in the future or not entering in to without a plan to make the situation go as smoothly as possible. You find yourself unable to concentrate even though you know you are in a situation that absolutely requires that you pay attention. You discover that you cannot think through and solve the type of problem that you have been able to handle in the past. It drives you to distraction and, unfortunately, you are already there.
This past week my wife and I went to the Roots of Impressionism exhibition at the DeYoung Museum in San Francisco. In the preparations to go to the show, it completely slipped my mind that since the beginning of my treatment crowd situations make me anxious and irritable. The show was only moderately crowded but shortly after entering the galleries, I realized two things: I was starting to get really jumpy and I had forgotten to bring along my Ativan which does a very good job of calming me down in those situations. By the time we finished our tour of the exhibition I was edgy enough that when some friends we had happened upon at the show suggested going to the café for a chat, I had to decline and head home to calm down.
As an aside, I think that the person who invented the audio tour for art exhibitions should be tarred and feathered. Bad enough in the normal sort of exhibition that you have to navigate around the clumps of people reading the labels and the explanatory posters, but at least their ebbs and flows are predictable. The people walking around with audio headsets on are a nightmare. They stop and start erratically. They make sudden turns and movements and they are completely unaware of the people around them. It is the same sort of behavior as automobile drivers on cell phones and just as much of a pain in the ass.
Returning to our previously scheduled disquisition…
Two days after the jaunt to the museum, a friend who had an extra ticket invited me to a Giants baseball game. I laid out a checklist for the game that included sunscreen and a long sleeve shirt to counteract the extra sensitivity to sunlight caused by interferon; several bottles of water, some fruit, and an extra T-shirt in case the fog came in and dropped the temperature 20 degrees. I forgot entirely that baseball games draw large crowds, especially on beautiful summer afternoons. The mere act of getting through the crowd to get to my, excellent, seat already had me twitching. I had once again forgotten to bring the Ativan that allows me to handle crowds more easily. The only thing that saved the day was that the people immediately on either side of our seats decided not to attend that day and there was enough extra personal space to let me relax. It was a great game, even though the Giants lost, but it could have been a really tough day.
You would think that the dodgy experience I had at the museum only 48 hours earlier would have left an indelible mark, but even that could not penetrate the fog…
It goes beyond merely forgetting where your keys are or what the name of a movie you saw in the past is. It extends to trying to remember what you walked into the room to do, what it is you were trying to say a moment ago, what you were going to make absolutely sure you got done today or even what you sat down to write about. Perhaps the most troubling aspect of brain fog is that it can actually make you forget the fact you have brain fog, a classic lose-lose situation.
You forget that you have noticed very particular situations that you made note of in the past with an eye towards either avoiding in the future or not entering in to without a plan to make the situation go as smoothly as possible. You find yourself unable to concentrate even though you know you are in a situation that absolutely requires that you pay attention. You discover that you cannot think through and solve the type of problem that you have been able to handle in the past. It drives you to distraction and, unfortunately, you are already there.
This past week my wife and I went to the Roots of Impressionism exhibition at the DeYoung Museum in San Francisco. In the preparations to go to the show, it completely slipped my mind that since the beginning of my treatment crowd situations make me anxious and irritable. The show was only moderately crowded but shortly after entering the galleries, I realized two things: I was starting to get really jumpy and I had forgotten to bring along my Ativan which does a very good job of calming me down in those situations. By the time we finished our tour of the exhibition I was edgy enough that when some friends we had happened upon at the show suggested going to the café for a chat, I had to decline and head home to calm down.
As an aside, I think that the person who invented the audio tour for art exhibitions should be tarred and feathered. Bad enough in the normal sort of exhibition that you have to navigate around the clumps of people reading the labels and the explanatory posters, but at least their ebbs and flows are predictable. The people walking around with audio headsets on are a nightmare. They stop and start erratically. They make sudden turns and movements and they are completely unaware of the people around them. It is the same sort of behavior as automobile drivers on cell phones and just as much of a pain in the ass.
Returning to our previously scheduled disquisition…
Two days after the jaunt to the museum, a friend who had an extra ticket invited me to a Giants baseball game. I laid out a checklist for the game that included sunscreen and a long sleeve shirt to counteract the extra sensitivity to sunlight caused by interferon; several bottles of water, some fruit, and an extra T-shirt in case the fog came in and dropped the temperature 20 degrees. I forgot entirely that baseball games draw large crowds, especially on beautiful summer afternoons. The mere act of getting through the crowd to get to my, excellent, seat already had me twitching. I had once again forgotten to bring the Ativan that allows me to handle crowds more easily. The only thing that saved the day was that the people immediately on either side of our seats decided not to attend that day and there was enough extra personal space to let me relax. It was a great game, even though the Giants lost, but it could have been a really tough day.
You would think that the dodgy experience I had at the museum only 48 hours earlier would have left an indelible mark, but even that could not penetrate the fog…
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