Stable!

Even though I had to take a break to get my Thyroid balanced again, The break has been useful for re-staging the disease. My nodes are stable since my last CT and the amount of cancer in my bone marrow is down to 10%. So this is all very good news.

Healthwise, I'll be starting the protocol again, I think. I'll be waiting to hear from Dr. Keating. And I should be getting the CPAP machine soon. I think the trouble with my sleeping was mostly due to the thyroid thing. I was really swollen and I think I was even swelling in my throat. Now that things are more regulated, I've been sleeping very well, even without the machine.

I am feeling great now. My energy is back and I've been using every available minute in the recording studio. Ideally, I'll have all the tracking done in a couple weeks (mid December) and then I'll let it sit for a while before I mix it down. That way I can make any changes.

In the mean time, I really need to get my video funded. I need to be at 50% funding by day 45 (1/2 way) and that is less than a week away. If you've already funded the album, thanks. If you feel like helping me a little more I really do appreciate it. My time table runs into April. By Late March/early April the video should be done and the Album should be up on itunes and Amazon and ready for official release.

I posted a more detailed table for backers on my project page at grooveduke.net.

For those of you interested in the long view, I am already funding the next album at Sellaband (again). Sellaband's website underwent some changes and during that time, I really couldn't reccomend it and I was debating whether or not to withdraw. But by all appearences, they have fixed the site. So even though it is competing with my video project, I am still using it as a fundraising site. I am doing comparisons between it and Kickstarter. To see which website will get my continued business. And I think that will largely depend on you folks.

The one where I am able to get people to actually support my nusical projects will be the website I use. So if you have any preferences, please write and let me know. I may do a compare/contrast article soon.

In the meantime, I am in this weird place: I have to be prepared for a coupkle eventualities. On the one hand, I need to be ready for the transplant, even though I don;'t know when it will be. On the other hand, I need to continue to promote my music and work on projects as though it weren't going to happen. My biggest worry in all of this is continuing to make a living. I know that when I'm in Texas, I won't be able to teach. And when I come back I'll practically have to start from scratch building my trumpet studion again. I am trying to be in a place were at least the selling music aspect will not be back at square one.

Thanksgiving Tracking, Health

Not in that order!

Thanksgiving was pretty good. Good Turkey. Good Ham. Games with the fam. Never a restful day, Thanksgiving is still one of the great secular Holidays. There is not much to tell. The level of dysfunction in our family is high enough to be normal but too low to be really interesting. My daughter and I had a little fight. I'm not really too sure what it was about. Harrison woke up today with the stomach flu, so I hope no one ate after him yesterday. Beyond some questionable calls in the game we played yesterday (what does it mean when the main referees and rule interpreters in the game end up winning it?), it was a very pleasant day.

It was the first time I ever really felt the ghosts of our departed family members. I missed Dad and Debbie so much. I also thought about the much older times of gathering together when the main family was based around Grandma & Grandpa Cornell, and I'd see all my Aunts and Uncles and Cousins. Aunt Peggy would always give me an early Christmas present and I'd share my latest poems with her. I don't know if kids today feel this way, I would suppose they do. But there is just a little bit of us that we see in our relatives. Peggy was the youngest of her family as I was the youngest of mine and we shared a love of art and creativity. She'd write poems to share with me when she found out I had an interest. My Aunt Glenna liked science fiction (or at least acted like she liked it) where as my Dad and Mom really had no use for it. Of course Mom is a voracious reader and always to this day spends a great deal of her free time devouring books.

So I guess Thanksgiving was a little more melancholy this year. Last year was the first year "the kids," meaning us kids, celebrated Christmas with our immediate families. As you may recall, my family was on the road swinging through Houston and doing some genealogy stops along the way. Not really a new tradition, but our kids, who were adamant that we should not travel over Christmas, were asking if we could do it again this year. I think that is the kind of thing that best happens just once.

My album is progressing nicely. i tracked some of the horn parts Last Wednesday and hope to do more on Monday.

My health is holding up pretty well. I feel demonstrably better. Manolo, my protocol nurse, called about a week ago asking how I was and seeing if I felt well enough to go back on the clinical trial. I almost do, but while I feel good I want to keep after the album. I can edit when I'm not at my best. The tracking has been holding me up, however. I have to get the parts down and it's very difficult to do the extended sessions necessary when I'm not closer to 100%.

As you see from the project banner above, I am still in need of funds for my video. So if you have a few dollars extra please consider pledging them to fund the video. It will be very cool!

I Love Music - I Feel Good!

Finished a marathon session yesterday. Ed Schaller and Jay Ferguson came into the studio with me and we laid down 6 tracks for the album and 1 Christmas track. That is the thing I feel the best about. Basic tracking is the most expensive part of the production. I am using Private Studios and Champaign and engineer Jonathan Pines who has great ears! So the sounds we are getting are great. The performances are great and I think you will all really enjoy the songs.

Set up took about 2 ½ hours (now you know why having the drums setup at my previous session was such a big deal…) so we literally blew through the songs. Two takes on a few, three takes on a few and we got one take on one! Pre-production is so important to be able to do that. It also helps to have musicians who read music. So for my Jazz 3 kids reading this, keep practicing sight reading! It is a skill second only to listening. If you can out the two together you will never hurt for gigs. Some gigs are ear gigs, some gigs are reading gigs. My gigs, you have to do both: you have to be able to translate what you see into what you are hearing and then know what to play. Which is why it is so hard to find musicians for my gigs. The guys who play by ear are usually really great, but it takes so much rehearsal time to learn forms and hits and little specific bits. The guys who read, take less time to learn the hits and the specific bits, but get thrown if something happens that isn’t on the page.

The guys who really do both are usually jazz players. They tend to work the best, but sometime even they have a hard time fitting in. Especially since R&B has a vocabulary of its own. It is similar to jazz, but different. So guys come into a gig using the jazz vocabulary and it sounds funny. In Jazz it’s very cool and very hip to play chord progressions that aren’t there (substitutions and reharms, etc.). The rhythm section is expected to listen and hear where the soloist is going and go with them. It’s a very intellectual process and the audience is expected to understand and appreciate what they just heard.

Some funk styles let you get away with that as a soloist, but the rhythm section will not go with you. If you go out, you better have a plan for getting back, because the music is not really about the harmonic progression. I am always pretty careful when I explain music to my jazz 3 kids, to always say, “one of the things that music is about…” because there is no one right answer to what music is about or what music can do. That is why I am so hooked on music. It can be so many things to so many different people and so it behooves us to shut up and listen to what is happening and try to get inside the style.

OK. My health. If you can’t tell by the way I’ve been gushing this whole blog, I feel soooooo much better today. I’m catching up on my blogging, then I’m going to go tweak some of the arrangements for the album based on what we did yesterday.

Live Funky, Love Strong.

BMB Results

Called Houston for the final results of my BMB. And got some good news. After slightly less than 3 months, I had a reduced tumor load of 10% down from 25% in August. Not as good as the 5% I had in December/January, but a good result anyway. I asked about the long term plan and didn't get an answer.

Dr. K is Out of Town for a week. Plus, I'll be working with getting the thyroid meds adjusted for at least another month. So the trial is still on hold. As far as whether or not the thyroid and the trial are related, we don't know. We do know that if I am taken off the trial it severely limits my options and I'll probably need to go on some kind of chemo therapy regimen.

The reason I draw a distinction is that technically these drugs I'm o aren't even chemo therapy. Revlimid is an "imid" which is an immune system agent. Rituxan is a mouse antibody. So both of them are working with my body to rid it of the cancer.

I suspected that the treatment was working because my platelets were trending up. I am now in the normal range after almost 1 1/2 years of being below 100 on every blood test. In fact I now have twice as many platelets as I had been having. Pretty cool, eh?

If we could just find a way to break up these silly lymph nodes!

In the mean time, remember my project at Kickstarter. The shortcut to it is www.grooveduke.net I need lots more backers. Here is another video from Jesse ewles.

Evans Blue ~ The Pursuit Begins (2007) from Jesse Ewles on Vimeo.

Today I am catching up with Facebook, and writing and arranging, etc. I am still not feeling right. Not nearly as good as yesterday. I guess that’s the way it goes. They said it would take several weeks for me to feel a difference and several more before my Thyroid levels were leveled out and several more before they were adjusted correctly. I’m just so very dizzy. I’m at my office trying to get the arrangements written for my next trip to the studio, but it’s so very hard to concentrate.

I had an appointment with my primary care doctor and we had a long talk about the short term and long term implications of my situation. I try not to speculate too much about the hows and whys of the what is happening to my health. It many ways it is just a fluke. Maybe something triggered the thyroid condition. Maybe it was just its time. Dr. Walker thought so too.

In the meantime, when my thyroid levels get back to normal, I should be feeling like a million bucks. Part of my discussion was about my weight, part about the sleep study. I am waiting for a call to set up my follow up appointment and get set up with a CPAP. Everyone who has one has been letting me know how much good it has done them. So I have high hopes for that.

I am making plans to lose about 20 lbs over the next several months. I’m sure to lose more during the transplant process, so I don’t have to go overboard, but exercise and some weight loss will be good for my general health. It’s funny, but when I lost 45lbs. Everyone said I looked great. Then they found out I had cancer and when I started getting better and putting that weight back on everyone still says I look great. I begin to think people are just being polite!

All kidding aside, my health and my album are the two urgent priorities for me right now. I have to finish the album while I still feel good. I’ve been sick almost nonstop for the last four months now. There is no guarantee I’ll ever feel any better (but I still expect it). So I’ve just got to move forward no matter how I feel.

Stay Tuned. I know times are hard. My dad used to tell the story of his mom hoeing potatoes all day to buy him a pair of tennis shoes. Which in the depression were NOT a status symbol. They were cheap canvas shoes and worn by people who couldn’t afford real leather shoes. I believe things will get better. I will fight this disease to my dying breath and in the meantime try to leave some lasting sign that I visited this planet. Pledge to help me at Grooveduke.net, if you can. But don’t spend your kids “shoe money!”

Anthropomorphizing Cancer and Death

Why am I obsessed with "The Devil Went Down to Georgia?"

Today's blog title says it all. I am gearing up for the fight of my life. Only one of us will walk away from the transplant alive. That is a statement of fact.

So you'll forgive me if I start to get my anger on. There is no date yet, but once the transplant team and my Oncology team work out a plan, we will. So why "The Devil Went Down to Georgia?" Because like Johnny, I'm planning on winning.




This is probably the best one ever!

Oops I Did it Again

If Brittany Spears will forgive me...

I forgot to mention that yesterday was my birthday. I basically sat around all day. I tried to sleep, but the apnea got worse during the day for some reason. But I was able to eat and only felt a little swelling. I had oatmeal for breakfast, a gyro (probably not a good idea) 1/2 for lunch, the other 1/2 for Supper and a sliver of cheesecake, the kind you eat, not the kind you look at. (Brittany Spears?)

It's 5:30 AM and I'm up, but I'm not sure for how long. If I can squeeze in another hour of sleep that would be good.

I got some work to do today. Local followups to my Houston trip. I have to let my local ONC know I'm on hold. Contact my Primary to make appointments to follow up the Sleep Study and keep on top of regulating the dose for the thyroid medication. I may even contact my ENT for a followup.

Now Kaitlyn and I are on the same thyroid medication by the way. Neither of us think this very cool though. I'd be lying if I said I wasn't bummed. Of course, I can't say for sure that the chemo or the cancer caused this. Maybe it was just my Thyroid's time to go. But honestly... how likely is that?

Still, I can replace what my thyroid does with the drug, so the real worry for me is protecting my kidneys. They've been over worked and under paid. I'll be needing them.

Today will be day 3 of Levothyroxin and I am hoping for a little more relief from my symptoms. If I can get rid of the dizziness that'll be a real plus. The swelling also needs to go.

Well, if like most people you've taken a break from reading the blog regularly, now might be the time to start checking it out on a regular basis again.

Subscribe. I have several ways.

Things might start to get exciting. If you are a baseball fan, I'm coming up on the last couple innings. I'm not sure of you'd call this the seventh inning stretch, but I am definitely starting to gear up for the transplant.

I don't have a time line yet, but that is the end game. I think I've played it pretty well up to now. Dr. Keating has been great, he's helped me keep my cool and not spend the last two years worrying. I haven't been feeling sorry for myself, I've been working, put a band together, recorded an album, hopefully I'll have a video by March (please click the link above and pledge, by the way), seen some of my students really start to take off, made a genealogy trip, renewed my wedding vows, played a lot of baseball with my boys and generally tried to take care of the business of living.

Now I turn my attention to staying alive. I told you all up front, that I intend to survive. During this resting phase, I'll finish the album. (I hope my voice gets better. It's kind of croaky right now!) I'll even start funding the next one at Sellaband. If you aren't signed up to get a copy, click the link above or go to www.grooveduke.net.

Make no mistake, my intention is to fight.

The Devil Came to Illinois...

If Charlie Daniels doesn't mind, I'll paraphrase. All hell broke loose in Illinois a couple weeks ago. It has yet to get better, really.

I'll cut to the chase first. My primary care physician ordered some blood work as well as a sleep study. And we got big hits on both. His office called on the way down to Houston to say that my Thyroid Stimulating Hormone was way too high. I mean like crazy high 79.92 when it is supposed to be 5.5. This is very bad mojo indeed. The diagnosis on the sleep study was severe sleep apnea with severe oxygen desaturations to 76% and breathing problems 35.3 times per hour. (Which explains why it never really felt like I got to sleep.

I was already on my way to MDA when I got the Blood results and just opened the mail today to read the sleep study results. The 1st meeting with Dr. K, Manolo (the study Nurse), and Alice (Dr K's PA) was a little short. But I begged not to be taken off the study so rather than take me off Doc put it on hold. But I think for all practical purposes I'll be off. He obviously has another idea and it doesn't matter too much if I'm officially off right now or not.

Before he left, he reminded me that I'm for a transplant at some time or another and as I said a couple entries ago, I am thinking it will be sooner rather than later. It does me no good to wait for a transplant only to find I've worn out all my organs from the previous chemo.

In the mean time, I'm 2 days on thyroid medicine. I was so sick yesterday that I was close to walking off the jet bridge and renting a car to drive home. My throat felt like it was swelling shut again. There is nothing worse than feeling sick before you get on a plane, knowing that for two hours you are 39,000 feet high and you can't get off for 2 hours. But I also knew that in all the times I felt that way over the last few weeks my throat hadn't actually swollen shut. I also knew that a plane flight was much less fatiguing than an auto ride back home. So I sucked it up and boarded the plane.

Houston did a complete restage of my disease which included CTs of my head, neck, chest, abdomen and pelvis...(you want to put barium up where?????) A Bone Marrow Biopsy, of course.

Results are basically the same as my last CT. Stable disease but still quite a few nodes. No growth is good, but I don't have the final results on the BMB. I have to believe the Bone marrow is better because my platelets have been trending up over the last month and are now at normal levels, but I'm not the doctor. So this month's report is a very mixed bag.

I felt like I slept better last night. I don't want to lay too much to the pill I took yesterday. But I really did wake up feeling better. I still feel very dizzy and I had a small episode of feeling my throat was swollen right after I ate lunch, but it only lasted about 15 minutes.

I also saw Dr. Schpall who will be my transplant doctor. I officially transferred my bone marrow donor search to MDA and they'll start looking again. I am hoping they'll find a 10/10 donor. One of the reasons to switch to MDA is to restart that search. The next is that they do cord blood transplants if they can't find an adult match. The next is that they are in the same hospital as my cancer doctor. So that they can develop a plan together. Once he transfers me over to transplant, I don't see him any more. So, anyway. I'm going to be heading into the final head to head battle phase soon.

So much for the "good kind of cancer."