"Hard" To Sleep - My Latest Medical Issue

There are those of you who occasionally ask me how I am doing and if I am healthy. Usually the answer is that I'm doing good. Now I have something a bit disturbing, yet amusing to share.

(Read on, as I know some of you are taking the drug that I am talking about here.)

As most of you know, I have APL Leukemia. Good enough. I beat it in 30 days back in 2005, and have been on maintenance chemo ever since - but ending that finally by this March.

Many of you who know me better also know that I have some odd habits, primarily being a vampire by staying up all hours of the night. My reasons - no one bugs me (usually) at night, and I can focus more on whatever work I'm doing. Fine enough, except it's getting hard for me to go back to any semblance of a "normal" life - the kind where one gets up in the morning and experiences most of the daytime world. (If only I drank blood, this would have a happier ending.)

So, now to my dilemma...
Due to the above habits, it has been almost impossible for me to even be tired at any time before 7 am. I'm tired of being that way and wanted some help to get back to normal. My doctor suggested some sleep aids. As I have acid reflux, she did not recommend any actual sleeping pills, but more along the line of "sleep aids." This includes such drugs as Ambien.

In my case, she gave me Trazodone. Apparently this is the drug of choice to offer when helping someone get drowsy. It is non-addictive and does the trick. What it used to be was strictly an anti-depressant. However, how it actually worked, still no one knows. Should that bother me? Perhaps. It's nasty (at the time) side effect was that it would knock people out with drowsiness. So these days, it's promoted as a sleep aid, with anti-depression qualities. However, again, no one seems to know how the mechanism works in affecting people.

And now on to the kicker...
I looked up potential problems associated with this drug. Bingo! There is a problem, that many men could consider a blessing.

It turns out that Trazodone has been associated with episodes of Priapism. Sure, you probably haven't heard of it. Let me say it more simply - Eternal Hard-On! And it's considered a "medical emergency." Funny, I never heard a woman say "problem" or "emergency" towards any man who kept an erection for more than, say a few minutes, if an hour. But it's true. In fact, on one site it states, "If the condition persists for more than 24 hours, it would be advisable... [for a specialist] to decide on a management approach." and mentions requiring "surgical intervention" that could cause permanent dysfunction. What?!?! On top of that is a possibility of cardiac problems. Well sure, considering how an erection is formed and works, that makes sense. All the blood goes to pump and prime "La Machine," and all that excitement can cause a ticker to pop.

One more thing to add... Priapism is also associated with such illnesses as... yes, Leukemia (which I have). That's two potential strikes against me - giving me the whacked-out hard-on from hell. Sure, I could be a woman's dream date - but only for one (very long) night (and day, and next night), before the fun ends.

I promise you that - regardless of age - I am nowhere near requiring Viagra, but it was funny to think that the same results could happen. However, unless I'm planning a sleepover with a harem, and it's my last day on Earth, I think I'll forgo this particular pill and stick with my tried and true Kava Kava and Chamomile teas for sleep-inducing. They work, just not as fast, nor dangerously.

Oh, and lastly, an ironic amusement for me is... Why do most ANTI-depressants cause suicidal tendencies? Aren't they supposed to prevent those? Hmmm... kill the patient, I guess. Blame society and parents later.

If anyone wants more info about the drug that'll give you a boner all throughout the night (while you sleep through it), or the syndrome itself, check out these links -

Trazodone -
http://www.mentalhealth.com/drug/p30-d03.html

Priapism -
http://en.wikipedia.org/wiki/Priapism

Ending 2007: Broken, yet blessed :)

So it's been an interesting year. Well, for those of you keeping up, it's been an interesting last couple of years for me - and for those who really know me... it's pretty much, business as usual with having a full life.

Here's the update:
1) Good news/"eh" OK news about Leukemia - I'm almost done with chemo. Woo hoo! Damn, too, as I am pretty used to it... and I like it!! (No joke, the hair is thicker and skin is smoother. No complaints.). I'm finished with all the maintenance treatments in February. That's all good, except that I've taken it for granted as keeping me above ground. After that, it's 3 more years of "wait and see" and hope nothing comes back. I'm out of the situation that put me in this mess, so I figure I should be good to go and use the word "cured" soon enough. That is the power of faith in one's self, I tell ya. Although some of you won't "get it," even if I do still face "check out time" in the near future, I still got at least 2 years' worth to find my old friends, meet several new very cool friends, and got a lot done. But I think I'll be around for quite some time.

2) I've had the fun year of injuries, especially right towards the end. So... recount - the mystery knee ailment, the broken toe and damaged foot, and the crushed fingers, including one broken one. I was told to keep it wrapped up for 6 weeks. Of course I, never one to be told "No," have already started practicing guitar again after just about 2 weeks. A bit painful, but my fingers needed a stretch.

One might think that this would be a good time to switch jobs... well, I got to end on a good note...
3) I had one more job left, yes with injuries in tow. This client was moving out of country and needed to get rid of everything (most everything went to donation, and a few things to us). My co-worker really needed a car, and as it turned out, our client needed to get rid of his - so I got him to give him his '99 Mustang. No joke. I myself got a few goodies that I had been hoping for, but were a bit frivolous. And with that, got my mom a nice present for Christmas too. All in all, a good time to cut and run, and start a new year fresh. Going back to doing photography and film, along with more writings. And hopefully a book or two by the end of next year.

I hope that everyone has a great and Happy New Year 2008, as I'm mine seems to be starting good.

The month of breaking bones... I must love pain

It's the end of year, and my body must be looking for something brilliant to do as a send-off to 2007.

Having Leukemia apparently isn't enough. I'm not suffering with it, I like the chemo... so what to do? Apparently, accidents are the answer. Yes, the ability for me to find new and interesting ways in which to crack bones in half - my bones - that will be the new hobby.

In this month, I have now obtained some odd knee problem (not a break, but that's not a good sign either), a broken foot, and two broken fingers (which I am using to type right now).

Yeah... the foot, I decided to cram my bare foot into a wall, big feet that I have (size 15, girls take note... HA!!), resulting in re-cracking open a break I did last month, which adds to my collectors' set of when I first totally crushed my pinky toe bones almost off in 1995.

Then an electric garage door wouldn't work, so we released the cable and I was guiding it down. It was slatted, not flat. So of course, I get two fingers caught between. I hear the crunching sounds, and continue to stare in disbelief as the door goes down. More crunching and then, "Crap! I should stop now and get them out." Hmmm...

The fingers are the forefinger and pinky. Yes, I make Devil Horns at everyone right now, as I barely touch anything (except for typing, because... I like pain, and proper writing).

So now I'm a limping, Devil-Horn waving, gimp for the next couple of weeks or so. Yay! I'm hoping that this nasty new habit/hobby of mine ends soon, as I've got better things to do in the New Year. Ah well.

Anyway... just sharing my tales of bizarre living. Kids - don't try this at home.

Phillippe..... :)

I lost a friend to cancer yesterday - R.I.P. Kelly Johnson (of Girlschool)

Although many of you might not know who I'm talking about - unless you were into the band Girlschool back in the early 1980s - I just felt the need to share some thoughts here. It's one of those things that one needs to get out and share with friends - and may in turn help someone else along the way.

I just heard the news that former Girlschool guitarist Kelly Johnson passed away on Sunday, July 15, 2007. She had been suffering bravely with spinal cancer for the past six years - and it finally won. I hadn't seen her in person for 24 years, but still this hit me particularly hard.

I first met Girlschool at the Keystone Palo Alto in early 1983 (although I had seen them before). We chatted up backstage for quite a while, doing an interview for a magazine I worked for at the time - Steel Meel. As it was, I had a huge crush on guitarist Kelly Johnson - and what guy didn't at the time, with her smile and late 1970s Farrah Fawcett hair-do, not to mention that this chick played guitar. To top it off, she was very sweet, and very charming.

At the end of the interview, as I was having the band sign autographs on some of the photos I had taken of them previously, I half-jokingly expressed a somewhat childish desire to go on a date with Kelly. I told her, of course I realized that I lived in the S.F. Bay Area, and she in England (over the big pond), but I had traveled to Europe before, and would do so again.

She smiled and laughed, signed my photo, and handed it back to me. She then said, "Sure, that would be great. We should go out sometime." My heart jumped, although my own cerebral dose of reality said to me, "Don't be stupid. She's a major rock star, in England no doubt, and you are just a guy with a camera barely surviving in California. No matter, I thought. She had agreed and smiled at me, and that was good enough for me. Even if it was just for an ego boost to a fan, she had made my day.

Kelly eventually left the band a year later, and eventually moved to Los Angeles - much closer to me. Unfortunately, I didn't know that until a few years after that, when she had moved back to England. Somehow, I was always a few yards behind her, so to speak.

Eventually I started KAOS2000 Magazine and started doing interviews with celebrities and such. After chatting with the guitarist in Venom, I got an email and a call from former Venom bassist Tony Dolan - who himself had just starred in "Master And Commander" with Russell Crowe. As Tony and I talked, somehow the subject of Girlschool came up, and of course I had to mention Kelly - her being that unobtainable love interest of fantasy to me.

This was around 2004. Tony then told me the news, how he knew Kelly's good friend, and had heard about Kelly's fight with cancer. She wasn't doing very well, I was told, although she was tough enough to have better days along with the worse. I was stunned. I had to get to England immediately. I had always wanted to see her and chat with her again.

I told Tony the story of how we had met and I had asked her out, and how I always remembered her. He laughed and said that he would pass my message along to her.

Around that time, I had gone through my old photos and found my pics of Girlschool and I backstage in 1983. I took one of the photos out of the album and it flipped over. I had never seen the back of this photo. Written on the back was a note with "Kelly" with her phone number. She hadn't just signed my photos, she had taken me seriously and given me her number. What an idiot I had been for never looking on the other side. It was 21 years later now - and she was very sick.

Tony called me back a few days later and had a message for me. Kelly had remembered me from 1983. She smiled when she was told the story, and from what I was told, the story had made her day. She was surprised and happy that I had still remembered her from those shows and still thought of her. Tony said that it might be possible for me to talk with her on the phone, or maybe see her, if she gets a bit better, and that she would be happy to do so.

Before I could make any plans as such - I got to join Kelly in her problems, as I got cancer myself. Leukemia put me in the hospital, and I couldn't do anything for a while, let alone make plans to travel out of the country. So I would wait it out, if she could. During the last year and a half, I had so looked forward to going to England to visit her, or at least get to chat with her on the phone. I didn't know how things were progressing with her.

Then yesterday night, my friend Rytchie called me to bear the news - Kelly Johnson had died earlier in the day. The cancer had taken its toll and she couldn't hang on any longer. And now, I have the most awful empty feeling. Most of my want to go to Europe just faded. I won't get that chance to say Hello or wish her well. And we won't get a chance to laugh about the photos or meeting during the heavy metal heydays. At least I have some friends out there whom I can share this with, and through this, they can now know who she was. Memory is immortality.

After losing some friends and family myself, and with the world in ever-chaos and turmoil on a daily basis, I had become almost immune to death. I've even come to praise it in certain ways. Even with my own illnesses, I definitely haven't cried over much in many years. But - I did shed a tear last night. I didn't really know her, short of a couple of days hanging out two decades ago, but it was just that bond that people (especially musicians) can form when meeting even just once - that can last a lifetime. But yesterday, someone's lifetime ended.

The moral of the story is - we go to visit sick family and friends, and we feel for them, and for ourselves. But sometimes we forget the friends we may have left behind - by accident, or just changes in life, or whatnot. It's good to go back and rekindle. It's better to do it when you think of it - not after it becomes an afterthought of "I wish I could have seen him or her one last time." We all have lives to live and have moved on, but looking back and saying Hello to someone who might need it at the right time is just as important.

Chocolate And Coffee To The Rescue

It may seem odd to some, but there are better cures for many ailments other than drugs.
I’ve been having weekly injections of “6MP” as part of the cancer treatment.

In fairness, many of the patients in the chemo Infusion Center have to deal with much worse than I do. Some patients have to sit in a chair, IV in arm, for an hour, while some are confined for many hours. I seem to recall one person having to do a once-per-month routine that involves 8 hours sitting in the chair, with an IV, not able to do anything more-so from the physical fatigue of the hard drugs.

In my case, my injection is literally that - no IVs. It’s literally a 2-minute intramuscular shot and I’m finished.
This is something that I have to do every week (once per week) for 3 years. Not much room for out of area vacations coming up.

My personal issue is the “Side Effect Of The Week,” as I call it.
I’ve found that 6MP can inspire a variety of body changes.
Constipation, diarrhea (and rarely the two together, although that’s another unpleasant description), sometimes a migraine, sometimes odd fatigue, and sometimes nothing. Usually the side effects don’t last too long, and they’re really not that big of a deal. Again, compare to what others have to do. I keep getting reminded of “poor me,” and yet others don’t see the flip-side. I would much rather choose my situation over another.

I had a theory one day, and put it into motion.
I had drank a half-a-cup of coffee before leaving the house to get my chemo injection. On the way over, I ate a chocolate bar (nothing comes between me and that). That particular day, no problems. I continued the theory the next week. Again, fine.

I mentioned it to Sherri, the head nurse. She said it made perfect sense, especially in curbing the more common migraine-like feelings.

1) Coffee has caffeine, which constricts the blood vessels in the head. This helps to alleviate pain.
2) Chocolate helps to release endorphins (“an dolphins?”), which are the “feel good” chemicals of the brain.

So in essence, I get no head, but I feel good about having chemo. A nice bargain.
And the cost is practically one dollar.

I had discussed this with a few patients. Everyone liked the idea, except one lady who blurted out, “No thank you with your experiments. I’ll take my pain drugs, thank you very much.”

I asked her if she liked drugs, and how much she was paying for them. $30. per pill, I believe was her answer.
Everyone gasped and told her she was nuts. Cocoa and coffee for a dollar was a much better drug trial - as set by me.
Of course, I did remind everyone to check with their doctors before trying that. I didn’t need someone with allergies or such suddenly keeling over. But apparently the treatment did work for a few people. Great! And the smarmy drug lady, I guess continues her vein of doing drugs, and wasting money. (Isn’t that what they told us not to do in high school?)

Swimming in a pee of green-blue... Leukemia update for Dec.

Hello one and all...

To some whom I have talked with quite a bit, I may seem to have disappeared for a bit. True. I had just been doing 5 days straight of a new chemo (for me), which I just finished yesterday.

For those of you taking notes and doing research - it's Mitoxantrone. And it was nice to find out AFTER I just finished it, that this was by far the most intense in the series of chemos I had done. So... I had been feeling not quite ill, but more in a flustered state of mind where I didn't really want to have any conversations that required putting too many sentences together. And as most of you know, me not being able to communicate is truly frustrating.

But that's all done with, and I thought I'd put up a blog to fill you in with the - always adventurous - new news. For one... amongst the side-effects, I only had a bit of a headache and very subtle nauseated feeling. I found that ginger works pretty good and dealing with that.

Then... I had a very neat party trick. About an hour after each chemo shot... I would pee a green-blue. That was fun.

The first time was the freakiest. I had already been warned, but forgot. So... I got out of the hospital and went straight to the Whole Foods Market to shop. While there, I had to pee (in the bathroom, not the store). I casually glance down and "WHAT?!" It was an odd mixed color of green and blue. Certainly not the yellow that we all take for granted. My mind began thinking frantically about if I had eaten some really bad vegetables earlier in the day.

But upon remembering the effects notes, I quickly resumed my normal day. HA!! Yeah, try it. It's fun.

OK... so yesterday was Friday, Dec. 2.
Right before going to the hospital, I remembered that Trans-Siberian Orchestra was playing in town. I had to go. Their show is amazing, and it was seated, so I wouldn't have to worry about overly exerting. So, promptly after receiving my final dose of major chemo, off I went straight to the concert. Amazing how loud music removes all nausea and fatigue. hehehe... Good stuff.

I ran into friends I hadn't seen in at least 10 - 15 years, met with the band, and home I went. And now, I feel "ugh!" Not too bad, but I could choose to feel a bit more... "peppy". Of course, at 3 am, I might just be tired. Hmm... there's a thought.

I had mentioned to the nurse at the hospital that I can see how others might feel bad and that I'm lucky to not feel that way. But she gave me more of an assurance that it really is myself to thank for my relative well-being, as I am always "up" all the time. Always busy, always pretty cheery, and just plain don't have time to mope about silly crap like... well, cancer.

A nurses’ assistant laughed the previous day and had said, that she couldn't see me dying... ever! Ah well, I guess I'll keep my attitude. it seems to work, and inspires others to stop whining. Thank God! hehehe...

And with that, I bid you adieu, as I head to bed. Ciao 2 all, Phillippe :)

PS... for those new friends out there who don't know what's fully going on... I reccomend reading my earlier blogs, going back to the beginning of August. Fun stuff. Yes, I'm still planning on writing a book about it all. PSS... Oh yeah, and for anyone who is sick and getting treated, I might mention that after 5 days of getting chemo IVs, OUCH!! My arm has it's spots of dull, throbbing pains from where they stuck me. Trust me, they missed more than a couple of times and had to "re-do" a few times. Grrr... but, grin and bear it. Gotta do what you gotta do.

It's official... I'm in remission, Leukemia-free

Alrighty kiddies... the news many of you have been waiting to hear. I had written to a few of you to fill you in on the bone marrow biopsy test results, but now can share the news with everyone.

According to the Stanford labs, they could not even find any sign of my ever even having had cancer at all, and no signs of having taken chemo. Now I'm considered "not human", as they expected me to feel horrible and be laying around.

No way. I've been out and about since a couple of days out of the hospital. (And for those of you who are new to what I'm talking about... read my earlier blogs. I had gotten one of the rarest, deadliest forms of Leukemia in July, and beat it in about 60 days.)

So, I finally saw my oncologists on the 19th and was given the clear bill of health. I am now officially in remission. And that was from just one chemo treatment (of four separate shots) while I was locked in the hospital room for the month of August.

Apparently that is not the norm (although some people do do as well), and now I can actually say that I have the 90% chance of being completely cured with no relapses. Now it's just down to two more chemo shots in the next few weeks (starting this Monday), and then those fun ATRA (All-Trains Retinoic Acid, a Retin-A derivative) pills for one year.

I should be fully back in action by around December. Good deal. I'm going to be locked down for the next 2 - 4 weeks (for the most part), so I'll be online and answering my phone more often for whomever wanted to chat or get a hold of me. I will be a captive audience, and not pull my disappearing acts. Anyway... just wanted to let everyone know. Miracle Boy beats Leukemia.

Woo hoo! Thanks again, as always, for everyone's support.