Viral Load Results - 1 Month In

The treatment is being done through Kaiser Permanente and Kaiser tests for viral load on a monthly basis. They tested at the beginning of treatment and, now that the one month date has passed, they tested again to see if the treatment is having the desired effect.
My viral load at the beginning of treatment was 3,550,000 IU (international units) per milliliter of blood. This is considered a high viral load. Not as high as the first time I went through treatment when it was 15,000,000, but still high. High viral load (anything over 800,0000) was considered to be somewhat more difficult to treat under the old regimen.
After one month of treatment, the test came back at 25 IU per milliliter. That is more than a LOG 5 drop in viral load which is an excellent response to treatment. Here is a post about what Log numbers mean regarding viral load.
In Hep C treatment, any number under 50 IU per ML is considered to be a Sustain Viral Response or SVR which means you are cleared of the virus. In the case of Harvoni treatment, this level of response has to be repeated at the two month test and the 3 month test to be considered successful.
Finally, in order to be considered to be cleared (or in remission) this same low level must be repeated in a test 6 months after treatment is finished. If you are below 50 IU per ML six months later you are considered to be, according to the doctors, in remission. The drug manufacturers, of course, say you are cured.
So, the viral load is currently below the threshold for an SVR which is great news. If this continues for the next two months it will be even better. It certainly makes the headaches and gas easier to deal with.

Six Months Later…Viral Breakthrough

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

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

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

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

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

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

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

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

New Drugs, New Treatments, New Hype

In mid-June of this year while at a baseball game watching my childhood hometown Minnesota Twins defeat my adopted home town team San Francisco Giants, a friend asked if I was excited about the news in the paper that morning about the new cure for Hepatitis C. He said that it cured 80% of all patients in clinical trials and that the treatment might last only 24 weeks instead of the standard 48 week therapy. The news was stunning. Which drug was it? I had been keeping up with the various new drugs in the FDA approval pipeline and had never heard of one with a viral clearance rate of more than 65%. Of course he couldn’t remember the name and none of us had a smart phone with us, so it took until after game and back at home before I could do any research.

This article appeared in the San Francisco Chronicle. It stated that about 80% of HEP C patients “with the most common strain” and relapsers from previous treatment were cured by the new drug. The drug was the protease inhibitor telaprevir, brand named Incivek by its developer Vertex Pharmaceuticals. Imagine the amount of money they must have paid a naming company to develop that brand name; rolls right off the tongue. The results from earlier studies had indicated that telaprevir increased the Sustained Viral Response (SVR) in genotype 1 HEP C, the most common genotype infecting US residents, to 65%. It seemed prudent to search out the source material to sort out all these percentages. A quick search of the web found this press release. In the fourth paragraph of the release it stated that “The sustained virologic response for patients treated with Incivek across all studies, and across all patient groups, was between 20 and 45 percent higher than current standard of care.” This seems to indicate that the low end of the SVR rate was indeed 65% and the high end might be almost 90%. The article and press release also indicated that 60% of treatment naïve patients achieved a rapid viral response (RVR) in 4 weeks and these folks not only would only be in treatment for 24 weeks, but had a 90% chance of achieving an SVR as well. It is not clear what the SVR rate for the folks who don’t achieve a RVR and continue for 48 weeks of treatment has been in the tests. It is also unclear whether there is a difference in SVR rates between genotype 1a and 1b. Folks who had relapsed after previous treatments had a 32% SVR rate when treated with the telaprevir, interferon and Ribavirin cocktail. This is very good news indeed for HEP C patients.

A month earlier, this article appeared in the NY Times announcing the debut of Victrelis the brand name of boceprevir (again where do these brand names come from) another protease inhibitor, this one developed by Merck. This drug, which is taken for either 24 or 48 weeks in combination with interferon and Ribavirin, has an SVR rate for treatment naïve genotype 1 HEP C patients of 65-70%. The SVR rate for patients who relapsed after previous treatment is about 40%. Boceprevir is a bit different in that the patient starts with 4 weeks of standard treatment and then adds the boceprevir for either an additional 24 or 48 weeks depending on the viral response. So we have two competing drugs available whose addition to the standard of care treatment increases the SVR rate by a range of 20 to 40 percent. Good news indeed but what is the rest of the story.

The rest of the story has several chapters from side effects to cost of treatment. Looking at side effects first, both boceprevir (Victrelis) and telaprevir (Incivek) have additional side effects to add to those caused by interferon and Ribavirin and both can somewhat intensify the interferon and Ribavirin side effects as well.

Boceprevir can increase the risk of anemia and neutropenia, cause strange taste sensations and cause intestinal tract issues.
Telaprevir also increases the risk of anemia, causes diarrhea, and most importantly can cause an itchy rash. The rash can be serious enough to require that the patient stop taking the telaprevir.

The new drugs are very much like the established treatment in that those with lower viral loads at the beginning of treatment have a better chance of success than those with high viral loads. Also like the established treatments, anyone who has ever tried a treatment, whether standard or experimental, and failed also has a considerably lower chance of success.

Both drugs are protease inhibitors. This means that they inhibit the action of an enzyme that the virus needs to reproduce. They are similar to the protease inhibitors developed to fight the AIDS virus. This means that they must be taken on a fairly rigid schedule: three pills per day, one every eight hours. If that means waking up to take it, wake up you must. They also need to be taken with food, so you cannot pop a pill and run off. You have to have certain types of food with the dose of the drug. This means that for 12 weeks (telaprevir) or 24-48 weeks (boceprevir) your life will be scheduled around your drug dosing.

Both drugs are vastly expensive as discussed in this article. Boceprevir/Victrelis will cost $1,100 per week making the cost of a full course of the drug either $26,400 (24 weeks) or $52,800 (48 weeks) depending on your viral response. Telaprevir/Incivek has been priced at $49,000 for the 12 week course of treatment. This cost is in addition to the $15,000-$20,000 (24 weeks) or $30,000-$40,000 (48 weeks) for the interferon and Ribavirin with which they must be taken. This also does not count the cost of the Procrit to fight anemia ($500 per week) or the Neupogen to fight neutropenia (also about $500 per week) should you need them. There are also the costs involved with antidepressants, sleep medications, thyroid medications, pain medications and whatever you will be using to deal with the rash and itching in the case of the telaprevir.

It is also not clear how quickly insurance plans will add them to their drug formularies. Kaiser Permanente, my HMO here in California, has added both to its formulary. I do not know which other insurance providers have done the same. Even if they are added, it is not clear what the requirements will be for a patient to be eligible to be prescribed and how easily insurance companies will make them available. From an economic point of view they should make them easy to get as even at these prices the cost of treatment is still much less than the cost of a liver transplant.
For those without insurance, I do not know how anyone but the wealthy could afford the additional cost. The cost of standard of care treatment is by itself so high as to exclude many HEP C sufferers from being treated. There are programs to assist those with low resources to get treatment but even with the drugs deeply discounted the ability to come up with as much as $20,000 for a course of treatment would seem impossible.

Despite all these potential problems, the advent of new drugs to combat HEP C is excellent news. Ramping up the SVR rate to a range of 60% - 80% is a vast improvement over the standard of care treatment rate that topped out at 45%. Psychologically, it is far more encouraging to go into a course of treatment thinking you have a 2-1 shot at beating the virus than to go in thinking you have just under a 50-50 shot. These drugs are also only the leading edge of a wave of new drugs and new therapy approaches that are under research and testing. There are new polymerase inhibitor drugs that have SVR rates similar to telaprevir, but with fewer and less severe side effects. Testing on the holy grail of finding a treatment regimen that does not have to include interferon is also underway with early stage results coming in soon. Within the past year, scientists have discovered a method of growing the HEP C virus in the lab. This means that future early stage testing of drugs can be done directly on the virus instead of with animal models. This should increase the pace of research dramatically. In all it is a good time to have HEP C if you are one of us infected. There are established treatments, there are promising new treatments and there are drugs and treatments in the research and development pipeline that seem to point to future in which HEP C can be attacked and treated with a high expectation that it will be successfully cleared from the human body.

Perhaps we can believe the hype surrounding these new drugs. Despite the problems of determining the actual efficacy of the drug in your own case, the potential difficulties in obtaining and paying for the treatment and persevering through the side effects, they have advanced the cause of combatting Hepatitis C.

The more cures, the fewer pig livers will have to be implanted in humans (sorry, I’ve been reading far too many science fiction novels during treatment).

Coming Back To Life

I finished my course of treatment for Hepatitis C on June 30, 2011. The last 6 weeks were particularly tough with bouts of nausea, some dizziness, decreasing red blood cell counts, consistent exhaustion and increasing mental fog. Eighteen months of interferon and Ribavirin apparently do a number on us humans. The good side is that at the end of the treatment cycle, the viral load was undetectable with negative viral activity. Now we wait for 6 months until January of 2012 for the follow-up test to determine if I have stayed negative and thus qualify for having a true Sustained Viral Response or SVR. It brings to mind the song from the Mel Brooks movie “The Twelve Chairs” with the chorus:

“Hope for the best, expect the worst
Some drink champagne, some die of thirst,
No way of knowing which way you’re going,
Hope for the best, expect the worst.”

By the way, did you know that Mel Brooks wrote the music and lyrics for the songs in his movies.

So we are hoping for the best over the next six months (though the thought that the next test occurs in 2012, the year of the end of the world certainly tempers the enthusiasm).

We return to the subject of the post after that small digression. On about the 8th or 9th of July, I was lying on the sofa catching up on the episodes of “Mob Wives” I had missed, when I thought about unloading the dishwasher and tidying up the kitchen counters. For months, this sort of urge was met with the thought that it could be put off until later that night or tomorrow or to some indefinite time in the future. But on this occasion, I arose from the sofa, walked to the kitchen and actually unloaded the dishwasher and wiped down the counters. It was the first sign that some mental and physical energy was returning. Over the next few days, I began to do a bit more. It was a great feeling to experience energy as opposed to lethargy. It genuinely felt like I was rising from the depths back to life. It’s going to be a long, slow struggle back to normalcy by all accounts, but as the old saying goes, “every journey begins with a single loading of the dishwasher.”

Bad/Good News 3 – Participating in Future Research Trials

The final item that concerned me about moving out of the research trial and getting treatment through standard channels is one that will concern anyone in the same situation. Does making this decision preclude you from participating in future research trials?

I specifically asked AVB, the research coordinator about that issue. I framed the question to her that “since I am dropping out of the trial to pursue treatment outside the protocols and on my own…” She immediately cut me off at that point. Her statement to me was that I was not dropping out of the study. I was consulting with the medical personnel in the study and my own doctors and making a decision about what was in my best interests as a patient. This decision transcends the study and is about what is best for the patient in their attempt to fight their disease as effectively as possible.

She stated that I have followed all the protocols, come to all appointments, kept accurate records and come in for additional testing as the situation required. Patients who have done these things are considered to be good research subjects. That fact that patients who have been reliable subjects make decisions to pursue courses in the best interests of their long-term health does not preclude them from being included in further studies. She stated that given a history of positive participation in previous trials she would be inclined to include them in future studies for which they passed the screening.

She mentioned that their have been people who have dropped out of this and other studies she has been involved in either due to viral breakthroughs, inability to tolerate side effects or inability to follow the study protocols. Some of these patients have cut off all communication with the study, not returning phone calls, emails and letters and not returning the unused study medications. In some cases they cannot be found and their ongoing health cannot be determined. These are the sorts of patients she would not include in any future trial. They are not reliable subjects.

This was a load off my mind as my percentages are low to clear the virus on continued treatment. While Telaprevir will no doubt be approved soon, there is not guarantee that I would succeed with it either and having the possibility to participate in trials of future promising treatments is another arrow in the quiver, so to speak.

The only real downside is that I am no longer treatment-naive…

Deciding About Treatment - did I avoid a disaster?

I few posts ago I wrote a bit about Questions you need to think about in regards to treatment.

Let me tell you about the first time I made a decision

It was my second visit to the Gastroenterologist, the fabulous Doctor C. The first visit was relatively brief in that we went over a bit about the disease and he order a full set of labs to determine the genotype of the virus, the viral load and a bunch of liver function tests as well as some general blood work. The primary result of the visit was to realize that I had a great doctor on my side. Doctor C is a warm, supportive personality and also a doctor who Listens. He is not one of those folks who are merely waiting for a chance to talk when he is silent. He listens carefully, gives considered answers and is well versed in the details of the disease. He is not a certified Hepatologist, but he does a great deal of work with coinfected HIV patients and is up on the research and the treatments for Hep C.

The second visit was more detailed as we went over the results of the labs. The bad news was that I had genotype 1 which is the hardest to cure. It is also the one infecting the vast majority of North Americans. My viral load was over 4,000,000 IU per ml. which put me in the category considered to be medium-high viral load. My liver seemed to be in good shape with the various enzyme and function tests not indicating there was much damage. By this time my wife and I had read a great deal about Hep C (interestingly enough for those of you following the progression of side effects, I have forgotten a great deal of that information and have to keep looking stuff up to refresh my memory). We had lots of questions and Doctor C took a great deal of time answering them. Then he asked the fateful question. Do you want to be aggressive in your approach to the disease?

Yes, I replied. He told me that he knew of one of his colleagues currently enrolling a study for a Vertex compound VX-950 (now Telaprevir) and reached for the phone. He caught the doctor in, set up an appointment for two days hence and I was in the process of potentially beginning treatment for the disease. I spent the next 2 days doing research on VX-950. It is a protease inhibitor in phase 3 testing and has a Sustained Viral Response result of 62-64% in trials when it is combined with the Standard of Care (Interferon and Ribavirin). The study in question was an open label phase 3 study wherein every participant got the experimental drug; they were just testing for dosage effects. I admit I had a romantic fantasy about the possibility of being in the study: Man is diagnosed with Hep C on Halloween, goes into treatment in January, finishes treatment in December and is declared clear of the virus under 18 months after being diagnosed. We all have our fantasies, mine are usually not about drugs, but this time they were.

I went to the meeting, learned about the study, was told about the drug and the SOC side effects, signed the papers and went in for the lab tests the next day. It turned out that I showed a thyroid abnormality in my blood tests and there was not enough time to get me retested by the official lab in time to get me into the trial. So close and then the chance for the experimental drug was snatched away. It was particularly painful at the time because there are so few phase 3 tests of promising drugs and so very few tests as well wherein everyone gets the experimental drug and there is no placebo group.

As it turned out, it was probably for the best that I did not make the trial.

The next 3 months were spent in an extremely high-stress situation. My organization was moving an entire portion of its operation into a new space. I had been managing a great deal of the operation for my boss, who was in the middle of number of large projects. In January as the facilities move hit is most vital period, his wife became dangerously ill and they suffered a financial reverse which threatened to wipe out their life savings. I had to step forward and assume control of the entire project and manage it through the actual move and start-up of the new facility. I managed to do it, but the cost to my health was extreme. I was exhausted all the time. I went home from work every day and was capable of merely sitting for a few hours before going to bed. My wife is convinced to this day that the stress load spiked my viral load from the 4,000,000 range to the 6,500,000 number it hit in my next test in June.

If I had been going through treatment, I would never have been able to handle the job that was thrust upon me. I would most likely have collapsed either physically or mentally due to the strain. So, even though I lost the chance to get a late-stage experimental drug which raises SVR rates 40% above the standard of care treatment, my health may be better in the long run for missing the opportunity.

I did not examine all the ramifications of my decision before I made it. That is why it is so important to examine all sides of the issue before you reach a decision. It is hard to go through treatment. Even at its best, it is tiring and depressing and long. So think clearly and try to plan for as many eventualities as you can. It can make the difference between a successful outcome and something potentially very ugly.

Week 6 Results

I went in yesterday for a blood redraw to redo testing for my Absolute Neutrophil count. The level of neutrophils in my blood is in the mid 500 range which is approaching the lowest number (500) they allow before they start adjusting or removing medications.

Because of going in for a retest, I was able to see my Week 6 lab results 7 days before my next official testing appointment.

First of all, my viral load is now less than 15 IU per milliliter. That number means that they can no longer detect the actual count of virus in the blood. They label this state "Undetectable" and it is the goal we are all striving for. It is great news.

This means that I have gone from 12,900,000 IU per ml. to under 15 IU per ml. in 6 WEEKS. This response continues to reinforce AVB’s (and my) belief that I am on the RG 7128 Polymerase Inhibitor as she has never seen a viral response like this on the standard therapy. If this stuff works this well on the other folks in this study and does not have side effects that are any more (and hopefully less) serious than the standard therapy, this is great news for those of us with Hep C. The study may also confirm that this new drug (combined with the Standard of Care) can achieve a Sustained Viral Response (SVR) in 24 weeks instead of the 48 weeks that is the current standard.

Let’s face it, any reduction in the length of time we endure the side effects from all this combined with a potential higher Sustained Viral Response (SVR) percentage, is the best news possible.
Secondly, AVB and I went over the total lab results package in serious detail. This is something I cannot recommend more highly. No matter what therapy you are on, go over the test results thoroughly and ask lots of questions about what the various numbers mean in terms of your general health.

The key item I discovered in this round is that my Hemoglobin is at 10.9 (the normal range is 12.7 – 18.1). Hemoglobin is the blood cell that carries oxygen around the body. My baseline number was 14.8. That means the hemoglobin content in my blood is 27% lower than it was at the beginning of the test only 6 weeks ago and I have become anemic. No wonder I am out of breath after relatively light exercise and movement and tired most of the time. My blood can only carry ¾ of the oxygen it could 6 weeks ago. It’s not that I have become a doughy sack of fat, it’s that I don’t have enough hemoglobin to carry the oxygen.

While that is a bit scary considering I now also running low on the white blood cells that fight infection, at least I know why one of my symptoms is happening and I can see it in hard numbers.

Treatment Starts Tomorrow or I’m Dreaming of a Flu-like Christmas

I’ve been accepted for an experimental drug therapy experiment run by Roche Pharmaceuticals. It is to determine the treatment efficacy of a polymerase inhibitor named RO5024048, it’s also called R7128. The early tests have shown a Rapid Viral Response (RVR) in 75% of patients which compares to an RVR of 25-30% in the standard therapy. The standard therapy is Pegylated interferon (brand name Pegasys or Peg-intron) and Ribavirin (brand name Copegus). You inject interferon once a week for 48 weeks and take Ribavirin twice daily for the same amount of time.

This experiment adds the polymerase inhibitor to the standard therapy (also know as standard of care or SOC). The preliminary results of some early experiments indicate that this new drug combination can result in Sustained Viral Response (SVR) or, basically clearing the virus from you system, at rates slightly over 70%. The standard therapy has an SVR of 43%. It seems like a worthwhile experiment to get in on.
There is a 20% chance I will be getting a placebo which means I will be getting the SOC and some sugar pills. That means I have a 4-1 shot at getting the drug, which is a risk I think is acceptable. I start treatment tomorrow and the following are some notes about how I feel.

Friday the 18th and I’ll be starting treatment.

They will be teaching me how to inject myself with the interferon and what the timing and sequence of the oral drugs will be. There is also a diary I have to keep detailing dosage times and any and all side effect events. I have no idea what to expect. They told me to bring 2 Tylenol, a chilled urine sample and something to eat, as the pills have to be taken with food. One of the nurses called today to remind me what to bring and when I mentioned that I had forgotten about the Tylenol, he said the Tylenol are very important as I will find out; not the best sign.

Despite the fact that they have told me that this is going to make me feel like crap much of the time; that one of the guys who posted to the biker Hep C site Hep C Straight Up said that doing the treatment was harder for him than doing time in prison and that my wife’s friend who is now in his SECOND go at treatment calls the interferon “flu in bottle,” I still am not sure what I am in for.

I don’t think I am afraid, exactly. I am nervous, anxious, have sort of a feeling of dread, but also a feeling of anticipation to get on with it. Flu-like symptoms are not something I deal with well, especially nausea so in that sense I am genuinely dreading getting underway. I know the initial symptoms can be harsh and I am also afraid I won’t be tough enough to deal with it. On the other hand, you have to be treated eventually at some level and I am only going to get older and perhaps more sick the longer I wait.

I am not sure if I should eat before I go in or not as the call came in today while I was dealing with one of my volunteers at work and I was distracted enough not to ask and I can’t remember anything anymore and so forgot to call back and ask.
Is the injection like insulin given in the fat or in the muscle? How much is injected, how much pain is associated with the shot. I am assuming some sort of pain or why the “important” Tylenol. Do the pills immediately make you sick? I am not sure of any of this and even if they tried to tell me, the symptoms and intensity vary a lot from person to person, so I might be wish-you-were-dead miserable or merely feeling like crap.

The oracles indicate that this is something that will be to the good in the long run, but the short term could be a bitch.

I feel blank. Not terrified, not foolishly optimistic, not blithely going in to it without any sense of its seriousness, just sort of wait and see. I’m sure I don’t understand how tough it is going to be. I have endured pain before and long-term discomfort involving back and foot and shoulder pain but not necessarily long term queasiness and long-term lack of energy and long-term achiness and soreness and exhaustion and that sort of thing. I know I have to do it, I know others have done it, but I am not “looking forward to it” in any anticipatory way.

What is it going to mean for my sculpture? Will I have enough energy to work at my studio at all? Will I lose my studio because I can’t afford it anymore? Will I lose the desire to do sculpture at all? Will I just feel too sick to care?

I’m scared, but I think the inevitability of the process means that the fear moves a bit into the background. I have to do it, therefore I will and it doesn’t matter how scared I am, I just have to go ahead. At least once I’m in to it, I’ll know how bad it will be and how difficult the next 6 or 12 months are going to be. I do feel that I’m getting the right drug and that it is going to ramp up my resistance and beat the virus. I feel that it is the right thing to be doing and that this is the right time to do it. I hope that helps. Maybe I can keep rereading that after I puke and convince myself that this is all a good idea.

I also feel it can’t hurt. Even if it doesn’t cure it, it has to knock it back some and buy more time for further developments. But that’s a fallback. The belief is that it will work and the result will be worth the cost.
Hope I can sleep tonight…