Roberta Dahle, Production Assistant

Suppose to discuss the negative thoughts that run into my head...again something from this possitive living course thingy.
Yea, yea --- I know the concept....
Become aware of your negative thoughts, and then change them into positive ones.

The negative thoughts I've been going through for the past couple of days since finding out on Wednesday that my test for Fuzeon resistence has come back showing that -- yes indeedy, I probably am resistent to Fuzeon.

So -- my thoughts are of just giving up, what's the use. I think alot of it has to do with the initial disappointment and feelings of loss. The loss I feel is that of the final hope I had that I could somehow find myself a viable treatment, become undetectable, and be able to look forward to the next 5-10 years of life, being reasonably healthy. Now I realize that the struggle will continue to be from month to month. So much of my life, and my defiance of my illness has been around being physically fit. Now, can I live with AIDS while having to deal with constant fatigue and limitations. Will I climb other mountains?
Somehow, trying to just turn it all into negative thoughts just doesn't work for me.

I know from all my research about the drugs coming up what the limitations of my life will now be. I'm dealing with the immediate real loss that has happened to me -- and it's important for me to be with that loss honestly and realistically -- to embrace it and hold it, and to include it as part of who I am now, like it or not.
I've always dealt with my illness head on, holding back no punches.
That is how I survive.

Been thinking alot lately about some of the statements I heard Barak Obama make recently on TV.

Our culture values and rewards things like beauty, wealth, celebrity, cleverness. Why can't we equally value being useful?

Only a very few can be famous, but everyone can be great. (MLK)

Last day of my commitment.

I thought I had long ago left behind meaningless things that you only did because you had to.

Again, today we will meet, and again we will have to decide what next weeks goals will be. Last week, a couple of guys talked about working out, another quit smoking, etc. What am I suppose to do?

If there is something more I can do to help me in my fight against AIDS, please tell me, and I will do it.
The only peace I know is in knowing that I've done all I can do, and then make the best of my life as it is.

Going up to McNeil Point will hopefully sustain me for the long Oregon winter. Always having to guard myself against depression which may set in this time of year -- although I never went off the anti-depressant, which I usually do in summer, so maybe this Fall will be better.
Maybe being part of the Health Management Group will help also.

Yesterday, saw Dr. A. Left me a bit depressed most of the day -- maybe because the rains set in on Sunday -- and everyone seems to be a little down now. I was her first patient -- and I asked her what direction I should head. Her response was that did it matter what she thought, since I'd do whatever I liked anyways. She didn't say it attackingly, and obviously something else was going on. OK -- so it turns out she now has 3 teenagers in the house, and I think she was probably saying it more to her 17 year old son, than me.
We're still waiting for the result of my Fuzeon Resistance test to come back -- probably this week. She also said she would present my case to the weekly doctor's meeting they have on Thursday.
We talked about whether to go on TMC-125, or MK-0518. Dr. A didn't feel there wasn't much of a different, especially since the merck drug is so new and may have unknown problems. But my research suggest otherwise. I already have 4 NNRTI mutations, and studies show that for people with that many mutations, there is only a .52 log drop in virus, as opposed to someone without any mutations achieving a 1.6 log drop. That is quite a difference.
Also, found out from Dr. A. that there were only 1000 or so slots available for MK-0518 in expanded access, and if I waited until Kaiser was approved as an expanded access site in January, they would probably all be gone by then. It was recommended that I go ahead and call the other site in town, The Research and Education Group, and get on their list. So, when I go home, I called them, and talked to Toni, and she put me as number 4 on their list.
Now, my concern is that I may have to make a decision to go ahead and take the Intergrase, even if my viral load (which is now 27,000) and t-cells (260) stay stable, when I would prefer and wait until a decline.
Decisions.
I think of the mountain.

I spent Friday night sleeping restlessly, knowing I had to be someplace.
By Saturday morning, I woke up, and started going through the motions, knowing there was someplace I needed to be. I headed up to the Mazama trail. The day started out foggy, but became clearer as I head up the steep trail, not stopping until I came to what I call Robin's picture spot. It took me about 2 hours to get there, and I was dragging from needing nourishment by the time 1 pm rolled around. But, after having my lunch of the BMT sandwich from Subway, I was revived, enjoying the beautiful Fall scenery, especailly the bright crimson's and yellows from the blueberry and huckleberry bushes. After another hour I reached the "summit" of McNeil Point, immediately climbing the high rock (which I used to be afraid to climb), and finding a perfect resting point to perch below the rocks of Mt. hood.
Why to climb?
In the end, I decided the psychological and spiritual damage I was doing to me by not going would be worse than any physical damage I might do by climbing.

Whew.
I really don't want to write, but made a commitment.

Last week, started taking a HIV Health Management Course. Was pretty skeptacal at first. I'm taking it primarily because I was asked by the county to go to Standford and take a course to become a leadership trainer for further courses. I figured that before I started training other course instructors, maybe I should take the course to begin with.
The purpose of the course it to offer managmenet tools, in a support group setting for those dealing with HIV. In my class, there's 6 people with HIV. I was skeptical about the course for myself in that I've had HIV for so long, that I think I'm already doing a good job in managing my illness -- and the idea of "support groups", with their whining and complaining, and wallowing in their illness isn't for me. There is a practical aspect to this course, and of course, I can always learn something new.
One of the lessons of the course is to set weekly goals. My first week I decided to eat an extra helping of vegtable a day. (OK, simple I know...)
For this week, I said I would explore some of the issues concerning my health, in at least four blog entries.
What brought this up is that I woke up in the middle of the night several times the past week -- not really a nightmare, but just going over the limited possibilities of my future. Of course, I know I've been in worse places in the past, but after having been relatively healthy for the past few years, this is a new unwelcomed space to be in.
I'm just concentrating on living each moment -- though this week has had some disappointments in it. I've wanted on several days to go on a strenuous hike up the Mazama trail one more time. I wasn't interested unless I could do the whole 14 miles -- staring again at the side of Mt. Hood. I'm afraid of compromizing my health, knowing that I would probably end up with a feverish feeling for several days after the trip. I know I am bidding my time right now, waiting for some possiblity in the future -- if there even are any good possiblity.
So I'm just been going on the climb in my mind -- but not feeling the same...

Regretts.
Maybe I made a mistake by climbing Mt. St. Helens.
Or by going on a 25 mile bike ride last weekend up through the trails of Forest Park.
Or by spending the day washing and restaining the back deck.

Starting to feel that feverish feeling for the last few days.

Yesterday go my final results which were done one week after I quit the trial. My viral load had popped back up to over 46,000 in only a week. Whew. They also included the genotype testing which was done. I compared it to the one I had started at the start of the study. 2 more mutations in the NRT class, but my susecptibility to Truvada seemed unaffected, it still gives a reduced response with about the same fold increase. Three more mutations in the protease class. The questions were these new mutations that had arose, are were they the ones they just started testing from. Most disturbing is that I have a reduced response rate now for Presista. One less totally good drug, which I had been holding out hope for in the past 2 years....

OK, the question now is with Fuzeon. I had asked Dr. A about doing some sort of resistance testing a couple of weeks ago, testing for the GP41 mutation which I had read about online. I had also posed the question to Eric Daar on TheBody.com, and he also thought it would be a good idea.
Got a call from the clinic yesterday, and Dr. A. wants to go through with the test -- which is pretty specialized and will have to be sent to Canada. I guess she also got my resistence test from the study, and realized that my options are again beginning to deminish.
Will have the testing done on Monday, along with a new viral load and T-cell.

Now, the questions is what I can even do with the information.

Didn't sleep last night, worrying -- feeling like things are closing in. The immediate task, staying healthy for the next few months -- realizing that I may need to reduce any strenuous activites such as climbing a new summit. I've already got a tough enough summit to climb.

Made it up, again, to the rim of Mt. St. Helens. Each time I do it, each time I climb, something revitalized in me, I'm awaken to living again.

Robby and I went up late Sunday afternoon, sleeping in the parking lot at the trailhead. We headed up alittle past 7am -- sleeping in a bit as I heard the poles of some climbers heading out at 5am -- too early for me.

As usual, Robby took more of a quicker pace, a spring I'd call it, for the first few miles, but we finally caught up together at timberline. I told him when we started that it was meant to be more of a Marathan than a sprint, knowing the day would be long.

As we headed up the climbers trail from timberline, we passed by many other climbers, beginning to struggle up the rocky attempts at a trail. As you got up the first "hump', the trail divides as most people seem to take the lower part, and then others, probably unaware of the lower trail, scramble up the the top of Monitor Ridge, where the poles set in piles of rocks, mark the trail.

It seems, as we get above 7000 feet, that's where I start to feel more and more in my element. This is where I need to be, and all is right with the world.
But I couldn't help thinking of Bruce from the earlier climbs, and I related the stories to Robby of Bruce's triumphs over the rocks, and of the triumph of his own spirit.
As we headed up the last 500 feet, I could tell that Robby was running low on energy. I tried to explain the benefits of the rest step, of the slwo and methodical placement of each foot, allowing the body to rest just for a moment. But I han't learned the rest step during my first climb of the mountain. I remember doing as Robby did, sprinting up 10 feet, then needing a few minutes to rest, but doing another short sprint. I didn't learn the rest step until the Rainier climb a few years later. And even then, I remember by second climb of St. Helens, and how I could go a few more feet before taking a break, and the third time, how it seemed so much easier, and now, even though older, how it seemed like I could go forever.
What is climbing? Maybe, 50% conditioning, 25% attitude, and 25% technique?

I made it to the rim 15 minutes before Robby, and took pictures of his triumph to his first summit. At first he was glad he did it, just for the sake of he told people at work he said he would, but I think after some time on the rim, he began to feel the magic of being on a summit, and appreciate the worth and effort it took to arrive there.
...Of Course, then began the Rocky Decent back down....

Two days of being on the old regimen of Kaletra, DDI, and Epzicon.
Other than the familiar Kaletra diarrhea, I'm feeling remarkably ok. That may be in part due to the antibiotic Dr. A. gave me to knock out the sinus infection I've been dealing with.

So...
I don't feel too bad about the climb I will be doing on Mt. St Helens on Monday. I guess Robby and I will head up tomorrow afternoon to spend the night at the trail head.

This climb will be poingant -- remembeing a climb from before.
It was about 9 years ago that Graham Harriman, Bruce Bills, and myself made the trip to the summit. We had all been pretty sick with AIDS, and was just coming through the fire with the help of the new treatments.
I remember the slow slog to the summit, but mostly Bill's efforts. Many years before he had suffered a severe brain injury when he was rifle butted by someone trying to break into his house. He had to learn to walk again, and use his arm. Yet, he had never fully regained the use of his leg or arm, and still walked with a limp. I remember from the climb that we had to unzip and zip up his fly when he had to go pee, his fingers were too gimp to do the job for himself.
But he was always of good cheer, and an easy friend to be around. I asked him during that trip if he ever regretted what he had lost from his injury. He said only that he could no longer play the guitar again. His determination still allowed him to lead a full life, which included being an avid skier. The week before our climb he had been skiing on Mt. Hood, and had decided to make one final jump, and had crashed and broken some ribs.
He wasn't sure he could do the climb, but here he was, dealing with AIDS, partial paralysis, and broken ribs.
I knew he was in pain, which even broke through the vicadin he was on. Bruce was normally, jovial, of good cheer, and would frequently make an off color joke. Ok, and he was also a good looking guy, as only a natural athlete could be.
As we got within in the last few hundred feet of the summit rim, I could tell that Bruce was in incredible pain. But yet there was this look of solid determination in his face. I have never seen anyone force himself through a wall like Bruce could, sweat dripping from his face.
As we summited, Bruce's good humor returned, and we spent an hour basking in an incredible day on the rim.
Bruce died last November. Whew....
Bruce was someone who was so alive, you can't imagine him not being here.

A few days after the climb, Bruce gave Graham and I a lamented momento of the climb...

At times of change,
thinking of the last 18 years, and the shock of my original HIV diagnosis.
From my journal then:


April 22, 1988
Hi. The end of a long week. What else an i say about it? On Monday, I turned thirty years old. It's suppose to be one of those traumatic experiences, right? People at work must have thought I was taking it particularly bad. Who could i talk to? Was there anyone who could understand -- when you get to the point that you feel you whole life had ended....and the mere fact of turning thirty is the least important thing you can think of. I thought of postponing my appointment. Something about going to find the result of my AIDS test on my birthday seemed a little bit too dramatic. It was like a bad television movie. If the results were negative, I knew it would open up the rest of my life to me. i felt like it might even be a new beginning. There was a girl, April, the nurse at the Spartan Plant whom i've wanted to go out with for a long time. It had gotten to the point where being gay or straight really didn`t matter. Sex wasn't as important as it was when I was younger. What was becoming more important was a strong monogamous relationship with anyone who could love and care about me and accept the love and caring I had to give. The gay world had offered that promise....but had ended in disappointment as I became hurt so many times. I had become to feel that it was not there. I had accepted a truce with my loneliness, but the hope was still there -- if not in the gay world, that there might be a girl out there who could care about me -- although I had failed to find it during my twenmty-eight years of trying to live the straight existence. But the hope was still there.
The hope. When I went into Dr. Pagents office that day, what did I expect? To be honest, I was prepared for the worst. I felt I knew my body, and the swollen lymph nodes I knew were indicative of a much larger problem. Still the hope was still there. Dr. Pagent had told me the week before that it was very unlikely that I had AIDS, especially that I would be showing symptoms already. I simply did not have the extent of the gay experience necessary for the usual exposure. Still I knew.
The answer came easy as I walked through the door. All it took was a simple quip on his part: "We do not have good news for modern man." And he again expressed his surprise that the test was positive...but of course this was irrelevant. And the complications began to set in. How complicated my life would become. The big question of confidentiality. How to deal with insurance, with my job, with my family...with the whole damn rest of my life. And the anger...the anger I felt towards the people who had used me when I had first come out. The anger towards myself...for letting myself and my family down. For my life being a failure. The ultimate failure, and I would die. The thought of death did not bother me as much as the failure, and the loss of faith in the world around me and the people I had known in my life. And the sadness in my attempt of having some hope in a god which I had tried to believe in, and the anger towards him, first, for making me gay, and then for killing me for it. And the bottomless disappointment...for living my whole life, and giving the ultimate sacrifice, my life, just for the chance of finding someone who could, who might love me, and having failed in this. And I did not want to live. There was a part of me which was glad that it was over. I had tried so hard, and I was tired. Perhaps it was time now to give up. I( wanted to yell out: "OK, now you have won, take the final breath from me and be satisfied!"
And that was just the beginning. How to describe for someone who has never been through this? For all of my life, even when things had seemed the most hopeless, even when I thought I had nothing left and even toyed with the idea of suicide, I still felt I had control. CONTROL. I could not find love, and sometimes not even friendship. I often failed at things I had attempted. But deep down inside, I felt I always had some control left. Now there was nothing left. I was totally alone, and I had been most of my life, but this time I did not even have myself to depend on. I had lost myself and all meaning and control over my existence. I was never so helpless. I went back to work, but of course I could not work. I would stare off into space, no even knowing where I was. Not caring. There was no place to go, and I could not even look to myself for support. Of course, I could reveal nothing to the people I worked with. I suppose they thought I was having a traumatic experience form turning thirty. I wanted to tell someone, anyone. But I as totally alone. AFter work I went to the YMCA. Trying to put some structure back into my life. But there was nothing to hang onto, and i left. AT home, in the relative saftey of my aloneness, and the total aloneness of it, everything broke loose. I layed in the grass of my backyard, yelling and screaming out of control. I had lost everything. Nothing was left. There was no hope, no life. Everything had conquered my being. There is no was to describe it. No way.

April 25, 1988 Monday
Time heals many things? You go into the fire, and then you come out again, but are you the same?
Last Monday night, with the depression I felt, and the many considerations...like that of being a martyr, and keeping the pain to myself, I did tell my sister. I had told her previously of my suspicions of being exposed to AIDS, BUT i knew that for her, as well as for me, there was always the hope that it wasn't true. We sat upon the couch for a long while, slowly talking of the many ways it would affect us. Her, telling me how unfair it was. Me, responding by asking what is fair? She would rub my hair, as a mother would a child...comforting the moment, knowing that the future would be many unanswered questions.
How could I sleep that night? Did I sleep? You wake up early in the morning, things going over and over in your head. Over and over. Not really caring about going to work, but doing it out of habit. I guess that's one good thing to say about habit -- it helps you to make it through when you are incapable of even the slightest thought. (Needless to say, I didn't get a whole lot accomplished at work that week -- one of those times when I wish I worked at a dull monotonous nonthinking type of jobs.
Tuesday morning, trying to hold the pieces of the puzzle, of my life together as it starts to fall apart faster than I can put it back together. Coming to the realization, that i've never had before -- that I cannot make it alone. By nine o'clock that morning, I knew I had to call someone before I totally desentegrated. I had been given the number of a Phillip Hudson by Dr. Pagent. Dr. Pagent had described Philip, and I half-way knew who he was because Phillip was a regular habitual Y goer like me. So I called, introducing myself by telling him I didn't know why I was calling, but only that I know I couldn't make it by myself. Just having someone to listen to me., We talked for about a half-hour, and I collected myself enough so that I could return to work and make it through the rest of the day. I saw Phillip again that night at the Y, but did not have the courage to go up him and say hello. I was very vulnerable at that point, and the last thing I needed him to say was Greg who? I was also still suspicious of why he was doing this. The attitude that no one really cares about each other in the gay world, so who was this strange creature called Phillip hudson. That night, Phillip called me one the phone, and we talked a long while. I began to feel more comfortable, and that maybe I could control things...maybe i could experience what happiness was again.




Listen to this article

Strangely sad.
Several appointments today. First with Doctor Antoniskis at 10:30. We discussed what had been happening with my treatment and where to go from here. My viral load taken at Kaiser Permanente was 1300, confirming some sort of breakthrough. (My viral load from the study center taken at the same time was 2000).
Dr. A. also thought it was a good idea to go off the study med and go back on my old regemen, and wait for Merck's Integrase to go into expanded access. Maybe Fuseon and Presista havn't been lost yet. Dr. A. reminded me that Fuseon developes resistence quickly, so I guess I can't expect too much, but of course, therein is my hope. Can I even build a viable regimen without Fuseon?
It seems pretty hopeless, but it is what it is.
From talking with Dr. A., I know it's useless to second guess my past decision. The only consulation I have is that I've done the best that I could. And if that is not enough?
The wait begins. And seeing how far and how fast my health declines as I wait for Merck's drug. Will I have enough time?

Afterwards, road my bike over to the study center, the Research and Education group. Got there just in time for my 12 oclock appointment. But some guy who was scheduled for 11 oclock showed up over a half hour late, so they pretty scrubbed my appointment. In my 20 years with HIV, I don't think I've ever forgotten or been late to an appointment. It's ironical that the people who always show up on time get shoved aside. (Some way to build responsibility in people -- punish those who are responsible). Or maybe it was because the other guy was new meat for a study, and I'm just the guy who is withdrawing from the study after failing it, so I'm no longer profitable for the study research center, who only gets paid by the drug company when someone participates?
It's the American way.
So, I'm starting my old regemen tonight.
Two steps back.....and where am I going?

Kilimanjaro AIDS Climb Africa HIV (Gregory Fowler, Christopher Carloss)

Two Climbers living with HIV, Jack & Greg, go to Africa to climb Kilimanjaro, the highest peak in Africa.

Somehow I ended up on this blog----
It seems like a change in my life, so maybe it's the right time.

Deciding tomorrow to change HIV medications.
I went on a research study several months ago after failing pretty much all of the available drugs out there. I've been HIV positive since, I figure 1986, although I didn't have the courage to go through the test until 1988 -- and I got the result back as it happened, the day of my 30th birthday. In 1993, my T-cells plummited, and I ended up on therapy -- AZT monotherapy to be exact. Those were the days when you took a high dose of AZT several times a day, and became violently ill for several months, as your body tried to tolerate the drug. From there, I added the drug DDI, then so on, until, wahlah!, pretty advanced resistence. (At one time, I was on a seven med combo). Luckily, I was able to stay on a cominbation that included Kelatra for 6 years, enough time to buy myself a few more drug options. But last winter, my t-cells again started to plummet, unit by May they were down to about 100. I had been "saving" the drug Fuseon, and with the study, went on TMC114, with a 50/50 chance of getting TMC125, and adding in Truvada and DDI for good measure. I acheived undetectable faster than anyone else on the study, after only 2 months, but when the 3 month test came, my viral load was 1200. We've just retested it, and it is now 2000. I'm afraid of loosing Fuseon and TMC114, so tomorrow, I will probably go back on my old regimen, and wait for the Inegrase Inhibitor from Merck to go into expanded access (fingers-crossed) in a few months. One more chance to reach undetected, and maybe start to worry once again about the normal things in life, not just surviving.

Gregory Fowler