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. 

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.

Great news that I can't post here.

Well folks, So much has happened in the last two weeks that I haven't had time to blog about it. It;s been a whirlwind. As I related earlier, I needed to start subbing in the area and I began doing that. I've added another couple of private students and I've got a lead on a steady gig.

The biggest news however, I can't post in an open forum. But if you are a professional in the music industry and a member of the National Academy of Recording Arts and Sciences, you might just be able to guess what that news is. If you aren't but know someone who is, please have them contact me at my email address. I have some information I need to share. Or if you are just curious, please contact me. I can and will share the information in private, but am not allowed to do so on blogs, forums etc.

Which brings me to something I can announce. I am looking to put a management team together. I have several pieces in place, but I need to start connecting the dots. I am also looking for financing. It s unlikely that I will find a label, because they'll be looking at the current dollars and cents and  probably won't really be willing to invest any of their resources for a future return. If you have the resources and would like to buy into my current album and invest in my next album, please contact me. What I have learned about internet promotion over the last year combined with what I learned about building a live audience during my Dr. Wu days should make my project a very good gamble. I won't post the dollar amount that I am thinking, but if you think about this as a small business, a little research into the average operating costs of a small business for two years should give you an idea of what I'll be needing.

But please don't think the only thing I need is money. I need the management team now. If we do things right, eventually the money will come. (I am assuming that I can continue without a major health setback, of course.)

Why is music a good investment? Because it has an indeterminate shelf life (In America and most of the world copyrights last practically forever - right or wrong, for better or worse. This is the big part of why Walt Disney now owns such a big part of the entire entertainment industry, even though Walt himself has been dead almost 45 years). If you are a musician and you play a gig, you earn your money and that's all you'll see. If you record your performance, that recording exists as long as there is a master copy of it lying around and each master copy is protected by law. The main use is of course to sell copies of the master recording, but it is also possible to license the use of the recording in other ways (TV, Commercials, Movies). In addition, each song (meaning Words & Music, not the recording) can be licensed in the same way. So when you form a company to exploit those resources, even if nothing happens in the first or second year, as long as the song exists, it still has the potential of being marketable sometime in the future.

But the key ingredient in this mix, besides the recording and the song is the marketing team. Someone to go out and exposure for the "product." That can include radio play (which is a source of income as well as a source of exposure), and direct person to person contact. So the secret of the music industry isn't really any more of a secret than sales in any other industry: a strong salesman selling a strong product will make money. There are plenty of salesmen in the industry of course. But there are way more producers of music. There is a music glut more than at any time in he past. So people marketing music can afford to be picky. It took me a year to find a publicist willing to put any work into promoting my music (even for a fee). So the only other people likely to be interested in my music are my friends, family and most importantly my fans.

That is my, current thinking on the subject. But of course the devil is in the details, metaphorically speaking.

Next Steps for Groove Duke

While I spent the last few years waiting for the inevitable transplant, I was working through my bucket list. But the best thing I did was dump activities that ate up time and provided little reward. So I basically stopped playing for free. I love to play and am perfectly willing to play for free, but each time I did, I gave up precious time with my family.

I cut out everything that didn't pay or didn't give me time with my family. What his allowed me to do was concentrate on what was working. So I rented a studio and doubled my student load over the last three years. Obviously the private lessons are the base ofmy income. While I was a little depressed about losing Jazz 3 this year, I think in the long run it is a real opportunity to grow my income. In the short term I am waiting for ROE 11 to pocess my background check so I can start subbing. I missed a couple opportunities last week and I need some positive cash flow. I think I can replace the Jazz 3 income if I can start subbing a lot.

In the meantime, TOFB have been gigging like crazy, leaving me no time to book Groove Duke or promote the album or keep looking for my "1000 fans." So , with a little break in the TOFB schedule, I am going to be working on Groove Duke. The first step is upgrading my website you see it as a work in progress at GrooveDuke.com. I am also working on some videos and drawing up plans for a new kickstarter project. So watch for another party soon.

As I said in my last entry, I go back to Houston in January and fully expect to continue to watch and wait for another 6 months. I am also looking to move my office. I am looking for a space near where I am now, but I need ground level exposure and about 5-700 more square ft.

More later, thanks for keeping up.

4th Week

I didn't post after my last weigh in, but I am down a total of about 17 1/2 lbs. But I have had to temporarily suspend my diet appointments for reasons I'll explain below.

So much has been happening that I haven't had time to update the blog. The biggest change for this year is that I won't be teaching Edison's 3rd jazz band. There was a change in the way the position is funded. The school district is now funding it as a differential position. What this means is the pay scale arrangement I had worked out with the Band Parents no longer applies and I would have to work at the scale established by contract with the teachers union. (Differentials are the pay a teacher receives for working with extra curricular activities in addition to their regular pay.) Of course, the scale for a differential position is not at all the same as the scale for a full time (or even part time) teacher. My arrangement with the band parents was more in line with that scale. In short to continue teaching Jazz 3 would mean a fairly severe pay cut. I tried to think of some way to continue teaching the band since this was the year I would get to teach my own son, but apparently to no avail. I haven't really spoken publicly about what happened, because I was still hoping that we could come to some arrangement, but so many people have been asking why and wondering what happened, so I wanted to inform everyone from my side. I do not know the reason why the change was needed, so I can't speak to that. But I was not technically fired nor was there any real bad blood. I am, of course, a little put out that I wasn't informed of this drastic of a change until the week before the band was to start. Had I known, I could have spent the Summer looking for other employment.

I had been looking to expand what I did this year, but instead of expanding, it looks like I am going to have to cut back my less profitable offerings. I won't be doing CIRCUIT band through The Conservatory this year, I will instead be looking to increase my group lesson offerings, beginning with an improvisation class meeting from 6:30 to 8:00 on Monday evenings at my office. The class is limited in size to a maximum of 5 people and this session we will be looking at basic ways to handle blues and rhythm changes.

Since it is too late in the year to find a full or part time band position, the most obvious way for me to make up the lost income is by substitute teaching. So I am in the process of getting that paperwork in order (TB test, physical and background check). That should be finished in about 10 days and hopefully, I'll be able to work a couple days a week.

The other major change is in the way I receive my Revlimid for the clinical trial. They switched the supply to the commercial supply through the Revassist program. It still won't cost me anything, thank goodness (Revlimid is quite expensive). But it will be a few more steps each month to get my refill. I really feel like this is the drug that is keeping me alive by keeping my tumors in check. While the tumors and bone marrow counts have fluctuated, there has not been a significant growth in the year and a half I have been on the protocol. And while I'd love to see the tumors go away completely, I'll take what I can get.

In general I feel like my health is getting better. The last time I lost weight was imediately before my diagnosis and losing the weight did not make me feel better, even though it was a truly significant amount. This time, I am getting a  little boost of energy and some of the tremendous pain I've felt in my foot seems to be going away. I actually did some dance moves again on the last TOFB gig. So all in all, life is still pretty good. And once I can get some steady money coming in again, I'll even be able to say that life is a great big bowl of cherries, metaphorically speaking.

3rd week of Diet

This is the third week of Transformations, Christie Clinic's medically supervised diet. I'm down 13 pounds, and 1.5 inches in my waist, 3 inches in my hips, etc.

I do feel an energy boost compared to the last time I lost wait, which was concurrent with the development of my CLL/SLL. This is a good thing, I think. I was worried that somehow losing weight as fast as this diet does would mess around with my condition. But the bottom lone to me was, "In my current condition, at my current weight, is it better to gain weight or lose weight or stay the same?" The answer to me was clear. It has to be better to lose the weight I am carrying needlessly. It doesn't improve my cancer by any means and all the bad it is doing, it does whether I have cancer or not. Again, had I known the course of this disease, I would never have let myself put the weight back on.

That is really one of the reasons I started this blog, besides informing my family and friends of the status of my health, it was a chance to give people who might be in the same position I was a clue about what to expect.

There are lot's of variables and many different specific kinds of CLL/SLL. I have a very active case, but not the most virulent. I was never a candidate for watch and wait, and early on it was looking like I'd would need a bone marrow transplant as quickly as possible. Now I am on a clinical trial that has stabilized the disease up to this point and the transplant is on hold indefinitely (although I still see my transplant Dr. every 6 months). So my recommendation is if you are in a healthy weight range, even if you lost weight due to the cancer, there is no advantage in gaining the weight back.

It is true, I used food as a sort of anti-depressant to help me deal with the new facts of my life, but I think an actual prescription anti-depressant would have been cheaper and more healthy than the attendant weight gain.

I am not a doctor, and so I temper this advice with the further advice that you should of course consult with a medical professional to decide on what is a healthy weight with or without cancer.

The fact is, at this point, I am almost back on track to get on with my life. I spent the last four years going down my bucket list, the biggest item probably being recording my album. So, it hasn't wasted. That project was near and dear to me. It hasn't really gone anywhere as yet, but that wasn't really the point.

So, as this diet is showing and as I believe and teach my students, it just takes a little bit of success to make you believe in your own ability to overcome any odds.

It's true!

Second week of diet

I began my diet a week and a half ago and I must say, it's been hard. It is the Transformations medically supervised diet through Christie Clinic supervised by my internist.

It is a low calorie, low carb, high protein diet; complete with personal counseling and weekly checkups/weighins. When speaking with my internist, he talked about his conversion from the philosophy of slow on, slow off. His analogy was of a fire. It may have smoldered for quite a while before it burst into open flames, but once it was openly burning you wouldn't say, "well it took a long time to start and we'll just put it out a little at a time." When it is doing damage, you want to put it out as soon as possible and limit the damage done and of course the longer you wait the longer it will take for you to put out.

So this diet is kind of tough. But since I've been granted a bit of a lull in my battle with CLL, (which on the contrary continues to be a battle of attrition) this seems like a good goal for the next 6 months. As you may recall, I lost close to 50 pounds after I got my first sickness of unknown origin but before I was diagnosed. This was intentional, because I thought perhaps my weight had something to do wih my illness. But unlike other times I had dieted, the weight came off steadily and easily even if I cheated some. I really thought I had found the answer. But unlike the other times I had taken off weight (and never had I lost this much) I never got that boost of energy and feeling of health I had before.

When the diagnosis came, I thought it would be hard to keep the weight on! How little I knew. So, I began eating like I was a teenager again. Silly me. I actually stabilised and began putting a pound or two back on while I was on FR, before thw therapy was having any effect on the cancer at all. (So I knew limiting the calories had been working, but the cancer had certainly made a difference.)

Fast forward to the end of FCR and I had put nearly all of the weight back on. And By the end of my 1st clinical trial with Revlimid as a consolidation therapy, I think I was pretty much back up to my pre-cancer weight with no sign of slowing slowing down.

I used this blog as a way to work out my depression and do my own psychological therapy, but as I started re-applying myself to my life projects, I began turning to food more and more as an antidepressant. Coke (the cola) is a pretty powerful drug and comfort food, as it turns out and while I never considered myself addicted before, I certainly was by this point.

Partly due to the course of my disease, I was never really ready to take on the weight again. I was planning my life in three month intervals, expecting at any point to be taken off my current therapy and taken directly to a pre-transplant regimen and Stem Cell transplant. The "All Hell Breaks Loose" point about two years ago being the absolute closest, and even after my Aug 5th, 2010 appointment, the transplamnt seemed very close indeed. So, I just didn't have it in me to take on anything else, but in the meantime my food dependence was growing.

When the interval between my appointments was moved to 6 months twice in a row and transplant was moved off the front burner, I knew the time had come to strike and strike hard. By taking this weight off I increase my chances of survivng the procedure and I gain a better quality of life until that time. And if the transplant never becomes necessary then I've truly done myself a real favor in the quality of life department.

Now that I've gone into a little further detail (not complete, but enough to give you an idea of where I am) I can tell you of my success so far. I lost just a little over 7 pounds my first week and I expect to have lost at least 3 more at my next weigh in on Wednesday.

I'll try to explain the diet itself and how hard its been (I never dreamed I'd have actual physical withdrawal symptoms when I quit drinking Coke cold turkey) in my next post. I am not doing any additional medications other than my current Revlimid protocol. And. most importantly, even after only having lost 8 pounds, I got a bit of an energy burst. All in all, although it has been very tough, I am quite pleased with what is happening and with the potential to be as healthy as I can be, CLL notwithstanding!

Thanks for reading. If you are an occasional reader, please consider following me. I update very irregularly at this point and a follow or subsciption will send you a little note to let you know when I update the blog.

Those of you with CLL, it might be interesting if you would comment and let me know if you have had any similar experiences.