Tuesday, March 26, 2013

The good news is: I am still alive and planning for the future. The bad news is, I have been falling behind in blog posts. It's late at night, I am sick again and I don't really feel like going into the great details of my trip to Houston. The news is: since I've been on 1/2 dose of Revlimid there has been slight progression and no real abatement of my neuropathy. But there is good news as well. Dr K, expects me to qualify for a clinical trial of chimeric antibodies by the end of the calendar year. As such I am taking the Stem Cell Transplant off the table for a while. When we were discussing that treatment, we really had no other options, but my positive response to Revlimid helped postpone that date until a new option appeared. Of course of the new treatment doesn't work, then transplant moves up again, but maybe by that time they'll have a better match.

That's all I feel like writing right now. Thanks for reading.

Thursday, October 4, 2012

I got an email from one of my followers yesterday wondering how things were going. I realized I hadn't updated my blog since I took the part time gig at the Music Shoppe. In music education and retail that caters to music education, fall is the busy time of year. Kids start band in the fall, usually and fall is Marching band season. So my part time job turned full time for the last several weeks. It is almost over, I have my last recruitment tonight and 2 more marching festivals this Saturday and next.

Not any real news on the CLL/SLL front. My last appointment, Dr. K gave me a 4 week break from the Revlimid then put me on 1/2 dosage. The last time I was at this level there was slight growth, but that was 5mg each day whereas my current dose is 10mg every other day. Will it make a difference? Well, this is the trial part of the trial. I don't feel any nodes popping up, so maybe that is good.

As I wrote (I think) after my last appointment, Dr. K thinks that the FDA will approve a new therapy for a trial for which I will qualify by 2014. If my cancer stays under control until then, that will be a big deal. MD Anderson was just approved for some major cancer funding under President Obama's challenge to cure several types of cancer in our lifetime. Dr. K, ever the optimist, truly believes that we are on the verge of a cure for CLL and this might be it. Although the official plan from my perspective is still: shrink the nodes, then head to stem cell transplant.

There are still people who believe that the government and drug companies and doctors are all colluding to suppress real cancer cures. This is false. If there were a real cure for "cancer" you wouldn't be able to keep it a secret. The fact is there is no disease called "cancer," it is a description of a group of diseases. So there is no single cure for cancer as each disease has its own peculiarities. My cancer is slow growing and at present incurable, the closest thing to a cure being the transplant. Other cancers can be sent into remission for long periods of time. Oddly enough the acute forms of cancer seem to be the easiest to treat if you catch them soon enough. But they will kill you fast if you don't. The word "cure" is very misleading because, as every cancer survivor knows, one single surviving cancer cell is enough to start the entire process over again. Will we "cure" cancer in my lifetime. I honestly think the chances are remote. But I want a doctor who believes we will, which is why I love Doctor Keating.

Other news in my life: My brother's house burnt down and he and his son lost everything. He is currently in the process of setting with the insurance company. I started a diet but it is rather expensive and it just might be cost prohibitive to continue. I sold my Bach Stradivarius to a student and am now playing a Bundy! With the right moutpiece, it is not a bad horn, but it is a student horn and doesn't want to do the things I want it to do. Vincent Bach designed the Bundy (this model was still in production for a long time as the Bach model 1530) so the sound is very good, but not a Strad by any stretch. Working at the Music Shoppe, I have access to some good horns and Chris is trying to sell me on a Stomvi titanium. It is a large bore and doesn't play bright enough for my taste. So I bid on a very special trumpet bell: a new york Bach Mercury.

OK, the Merc was the student level horn of Bach's New York days. So it doesn't sound that great right? Well, Mr. Back used the same Mandels to form all the bells whether they were Strads or Mercs. The difference, as I understand it was the Mercs had 2 piece bells. However, in the early days in his little shop in the Bronx, Mr. Bach needed to sell horns (turning over inventory is the name of the game in merchandising whether at the retail or wholesale level). Mercs, being cheaper, were easier to sell so when he needed an influx of cash, he'd take the parts that he had in stock and build a horn he could sell and stamp it appropriately for the price point. The point being that some Mercs ended up with Stradivarius bells: the only difference being the model stamp. So I scarcely dared to hope that I might have acquired a New York Strad bell disguised as a Mercury. But since all of the lacquer is gone and the bell seam is quite visible, this is clearly a one piece bell. How awesome is that? The only problem is that Mercury bells did not get a mandrel stamp to identify which size bell. I contacted the seller to see if they still had a serial number from the horn from which it came. They didn't. Who knows how long it was hanging around there repair department? So I am not sure exactly what mandrel was used, but It is a new york bell.


Friday, May 18, 2012

Sick Today

Quite a bit of news since I last posted. I have taken a part time job with The Music Shoppe as Educational Rep. That is: Road Rep. I got a call from out of the blue from Chris, the manager at the Champaign store asking if I'd be interested. I was, but couldn't give a definite answer for a couple days. I had a short meeting with the owners and Chris and worked out the details and began working April 16.

In the meantime, I had auditioned for a Cruise line contractor a month or so before, but was generally unimpressive. They did say they'd put me on the substitute list but I didn't think anything would come if it. Nevertheless, I got a call the Friday before I was to start at The Music Shoppe saying that they had a 2 month contract if I wanted it. It was a bit late, and as much as I hated to turn it down, I had to do so. Working part time at The Music Shoppe allows me to continue to teach privately which is probably better all round. I hadn't worked out how I was going to get my prescriptions delivered to me, etc. If they had called a couple weeks earlier, I surely would have taken the gig.

I also started a new project on Kickstarter thinking that I'd put off recording a new album long enough and with the new job, if I didn't get it done this Summer, it might be a couple years before I'd get around to it. But as of now there are less than 60 hours left and it is not looking like I am going to meet that goal. It was the most ambitious project I'd undertaken: the goal was 1/3 again the total of my first project. I am trying to figure out what my plan B is going to be. I made the goal high not wanting to go into debt again for this project, I made the goal too low last time and ended up having to borrow to finish it. Better to wait and try again later than do that again. In the meantime, I do have two new songs ready to be mixed down, but no money to have it done and no money to make an physical copies. Of course, physical copies are really just my homage to the past. Truthfully, it's almost a waste. CD sales continue to dwindle and Amazon and itunes are steadily growing and believe it or not, sales of vinyl are at a two decade high. That is why I decided on the vinyl with download format. All the cool kids are doing it!

The latest news is we've been watching Bryson all week. He just keeps getting cuter, but he came here with a cold and I think he gave it to me. I started getting a runny nose Tuesday night, woke up with a sore throat and horrible sinus drainage. It got steadily worse as I made my rounds in shop's van and by the time I got in, I was way too exhausted to teach lessons. I went home and dosed myself with meds, but still woke up Thursday even worse. I got more meds at the store and slept basically all day. Today, I've been better, horrible sinus headache most of the day, but the mucus in my lungs is loosening up and I'm coughing it out. I have to be a little careful to be sure routine colds don't turn into pneumonia, so I am truly glad  I was only working part time Monday through Wednesday. I had the latitude to take a break and try to get better.

On the cancer front, I am still taking Revlimid and am holding off on a transplant. There is a new clinical trial reported in CLL topics, but I don't think I qualify and even if I did, this particular trial is not very tempting. It involves testing the new agent against a placebo. I'm not really interested in being that kind of guinea pig. It does involve the drug that Dr K said was very promising however and when the right trial comes along, I'm going to do it.

I've been lazing around all day today, just worn out from coughing and blowing my nose. But not really sleeping like yesterday. I watched a couple great old movies: Mr. Smith goes to Washington and It Happened One Night. I also made a McD's run, much to Kaitlyn's chagrin. She's trying to make me eat better. That is one bad thing about the new gig. I am out on the road and eating too much take out and gas station food. I'll have to start taking a cooler with veggies or something, eventually.

That's most of what's been happening. tune in later to find out plan B for Groove Duke, and if you want to make me feel better go to grooveduke.net and pledge. The chances of me getting enough pledges to complete the project is very low and no credit cards are charged unless the goal is met. But the show of support is truly appreciated!

Later


Friday, April 20, 2012

Folks, tonight I begin another funding project on Kickstarter. My first project funded my album, Heavy Mariner. The second funded the video "Stick Boy." This project will fund an EP called Galactic Paladin.

Hook Driven, Horn Driven, Radio Friendly! If my last project was a salute to Rhythm and Blues, this project is my salute to the AM radio culture of my youth. How many nights did I lie awake in bed listening to WLS out of Chicago? How many mornings did I wake up to the voices of Larry Lujack and Little Tommy? I remember staying home sick from school soon after Michael Jackson's album thriller came out and hearing Billie Jean a couple times an hour! I knew it was destined to be something special.

I can't claim my album will make the impression that thriller did, but I do claim it will be every bit as special to me. I have six hook filled songs ready to trim down to the obligatory 2:40. OK, they'll probably be closer to 3:30 but who's timing? The point is, I am trying to make them radio friendly, at least if you're listening to radio in the 70s and 80s.

The titles have not been announced yet. So I am going to save that for later in this campaign. Two you will recognize, two you will recognize if you funded Heavy Mariner. Two are in production even as I write this.

I am so excited and yet apprehensive. I have set an ambitious goal for an ambitious project. Have I grown my audience enough to really fund this effort at this level? Only time will tell. What I hope for from my readers is a trip to the website www.grooveduke.net that is DOT NET. not dot com. I have that set up to forward the email to the actual project page on Kickstarter. I am hoping for 60 donors at the $100 level! The $100 package is 2 EPs, 2 Tshirts and 2 copies of Heavy Mariner. It is by far the best deal, but it does come at a cost.

The funding levels beyond that offer some personal experiences like getting a signed & numbered print of the art work. Getting an all day trumpet lesson with me. And for 1500 you can name your own reward, which I assume will be a concert somewhere. Frankly $1500 is the minimum price for the band when we play partied or other events so it is a great way to get the band for your birthday, anniversary or wedding. Yes, we'd even do a wedding at that price - usually weddings are more on the order of 3-5K.

What else can I say, the project is great, the band is groovy and the rewards are amazing. Pledge now!
grooveduke.net

Wednesday, February 15, 2012

The World is What You Make It

I never blogged about my last trip to Houston. Granted, I should do it while it is fresh in my mind, but I’ve been pretty busy since I got back. I’m still looking for that business opportunity that will make up what I’ve lost this year. I have about 3 projects going right now, but none of them are really bringing in the right kind of money yet. I’ll keep working though, eventually something will break open and give me an opportunity to run with it.




My trip to Texas was great. I am by no means cured, but the Revlimid has been tolerable and it seems to be holding everything steady. I still have several significant tumors, but they are not growing and even seem to be shrinking slightly. The results of the bone marrow biopsy likewise were good with less cancer in the marrow. So the only mitigating factor was that there may be a few more small nodes kicking up in my abdomen. But the overwhelming news was good.



I still wish there was a cure, but I’ll just have to be happy to hold the line. At this point the new treatments are getting ready to go to clinical trial. Dr. Keating said I should ask every time I call for a refill on the Revlimid to see if the trials have been approved and if I qualify. You see they are looking for frontline treatments, so many of the trials are wanting chemo naïve patients. If there is a trial for salvage or consolidation or relapsed patients, I’ll qualify. I asked him what the trip wire would be for transplant, and he said if these new therapies weren’t so close, we’d be there now. I knew that, but since I backed away from transplant last Summer, I have been imagining that it was different.



So my treatment strategy is: stay on the Revlimid until the new drugs are ready for trial. When they are, I take the trial to get the nodes shrunk down then go to transplant. I just don’t have a timeline yet. And in the meantime I want to record one more album. I’ll be fund raising for that soon, so keep your eyes open.



I also found a new movie quote. This one from Silverado. The crooked sheriff, Cobb has just told the hero Paden that he’d hate to see Stella, the manager of the Midnight Star saloon, and a midget (I know it‘s not politically correct now, but that‘s what they would have called her at the time) get hurt. Stella’s motto is “The world is what you make it. She has adapted the Midnight Star to fit herself as well as her patrons. Paden is immediately taken with her zest for living, so Paden, who was about to get involved in the struggle between the big rancher and the settlers, is forced to sit out. Stella and Paden are talking over drinks and Stella is wondering why Paden is sitting still and watching the injustice take place. When she finds out she gets mad and gives Paden a little speech: “Cobb's using me to stop you. So good people are being hurt because of me. That makes me mad. Some people think because they're stronger, or meaner, that they can push you around. I've seen a lot of that. But it's only true if you let it be. The world is what you make of it.”



It may sound corny or trite, but it’s true. We can change world, even when we can’t change ourselves. So I guess Todd Rundgren was wrong. He asked, "How Can I Change the World When I Can't Change Myself."

Wednesday, December 21, 2011

Next trip to MDA

I have my next trip to MD Anderson in January. Unfortunately, Jana will have to stay home because she is having surgery this week and won't be able to travel. It is great to go to the best cancer hospital in the world, but it can and does get expensive just to make the trip. Luckily, yesterday Southwest had a 1/2 fare sale for flights in an out of STL. That works great. Cheryl lives close enough to drive me to the airport and I can park at her house. So I got a round trip ticket to Houston for the price of a one way! I'll use the difference to pay for a rental car. I'll stay at Becky's house. When Tom was still alive, but unable to drive, he would let me borrow his car. If I had a multi-day appointment, I would. But with Tom gone, and Becky extremely busy, that doesn't really work. It is actually cheaper to rent a car, than to pay for transport from the airport to their house and back. And for sure renting a car for 3 days is cheaper than 3 days in a hotel.

I just can't say how much friends have meant to me since I got CLL. It's a stupid disease! My appointment will involve re-staging with a CT scan and a Bone Marrow Biopsy. I'll see Dr. Keating and Dr Shpall. I'm not sure when I'll go ahead with the transplant. Again, my thought is: as long as I am doing well I'm not sure the risk is worth it.

That's all for now. 

Wednesday, November 2, 2011

Still Looking for a Team.

It may take me quite a while to put my team together, but I am currently talking to people, seeing what their time is like and where their interests lie. As I said in my earlier article, music can be a long term proposition. It's true that everyone wants the big hit and immediate rewards, but that's like hitting the lottery. There are others ways for a music career to pay off in the long run, as long you have planned for survival in the short term.

 I found a band about 23 years ago sitting lonely in the cut-out section of the record store. Cymande as they called themselves broke up in 1974 and as far as I knew this vinyl had been sitting there since then. It was called second time around. I am always up to explore something unusual, so I bought it. It was an awesome little album that fused a lot of elements that I liked. Some people called it funk, but it had all kinds of odd meter grooves, like you find in prog-rock. It had a horn section. It's members were all in the UK from the West Indies, which reminded me a little of Osibisa who were half from Africa and half from the Carribean. I enjoyed the band, but since they had already broken up, it was clear find more albums was going to be tough. And from the band's perspective, they had their moment in the Sun.

But we never know what imght happen in the future. Who else might dig up and old album in another cut-out bin or how popuklar music would develop. The first thing that can happen to a song is another band might choose to cover it. And although your original may not have been popular, there is always the chance that people who cover it are and include it on a popular album. I have a couple friends who have managed to do exaclty that. And such was the case with Cymande in 1988 (15 years after they broke up), although I am not sure that the cover version sold any more than the original, it was the beginning of a new life. In the 90s, rap acts began sampling bits of tunes for their mixes, digging old school grooves. And suddenly all those albums sitting in all those cut-out bins were being scoured by Rappers and hip-hop artists for grooves to sample. Cymande suddenly was making money from their music again, probably more than they made in the first place. They began releasing records again in 1999, recording a couple new albums and releasing some anthologies. Their music has made it onto video games, into films, been sampled for hip hop, and must certainly be considered a minor success. But it wasn't a straight line and it wasn't the classic rock star arc.

I am not sure how much of that was by accident, luck or planning. But I do know that if they hadn't had a catalog, nothing would have happened. Artists have to create. And an artist who eventually wants to make money has to maintain his ownership of his creation. But he also has to have the access to the business means to exploit any opportunities that may arise. Which may involve forming a company that doesn't really do anything for years at a time, then suddenly an opportunity arises and the pieces are in place and one opportunity usually gives rise to another and etc. We don't know what the future holds, we do know we need to be prepared.

Interested? I am still looking for a team.