Did You See Us?

The appearance was for the Festival of Trees and to promote our upcoming Christmas Show at the Virginia Theater. I haven't seen the tape yet, but it should be on their website eventually.

It was a late night and an early morning and I'm tired but excited. No Pills Tonight. So once again I'll get a good month of pretending everything is normal and maybe feeling better than I have. There is a certain joie de vive that is a hallmark of who I am and how I see myself that has been hard to find and tap into since I've been sick. In the back of my mind, I always know I'm sick. That and the tiredness that just won't go away. Even naps don't help that much. Not like those early days of college, when I could take an afternoon nap and feel like a million dollars and some change. Or stay up all night, if I needed and still function the next day. There was always the expectation that at some point, I would feel better and that would keep me going.

So now, I have to rely on faith. Faith is believing something in the absence of proof that it is so. Or perhaps believing in something before the event that proves it true or false. So, I have to believe that I will eventually feel better again though there is no evidence to suggest I will, and some evidence to suggest I won't.

But, even though I don't feel "well," I don't feel bad. Which not every cancer patient can say. And occasionally I feel very, very good. I believe that once my blood counts start going back up, I'm going to have the energy again and I'll be clowning as much as ever. That shouldn't take too long. Did I mention I'm excited? I really believe that in two weeks I'll be feeling "well." I can't wait!!!! I don't even mind looking forward to the BMB as long as I start having energy again!

WCFN and the Festival of Trees

Well, I just got back from setting up for our appearance tomorrow and i found out we are not going to be on WCIA, we are on WCFN. So I think that is just cable. So if you can't get us, don't worry. We'll do 3 songs over the course of the hour.

I took my last two pills while I was there. I had bloodwork today and I'l pick up those results tomorrow. I've started dreaming about the BMB. Ugh. My big strategy on that is just not to think about it. There is literally nothing I can do. I have to have it and it's going to hurt. But if I can keep from thinking about it for the next few weeks, it will only hurt for those 15-30 minutes and then it will be over. If I keep thinking about it, I'll live it a hundred times before it actually happens.

The CT scan will be the second week in December, I think. I haven't looked at the calendar lately. CTs don't worry me anymore. It'll be a complete neck, chest and Pelvis scan. We'll see if there are any nodes left. Then the Biopsy at MDA and i should know what the next year or so of my life will be like.

True, if they've knocked it into a complete remission, it could still come back in anywhere from 3 mos to 10 years. Guess which I'm hoping for? Once you have CLL/SLL it doesn't just go away. It is technically an incurable cancer. Except for the transplant. In many cases a transplant is a cure. In other cases he transplant kills you. So I'm wanting to wait on that. If I relapse sooner rather than later, transplant starts looking more and more likely. But that is the future. I'm hoping for great news.

Well, isn't this like me? I don't write much for a couple weeks then post twice in a couple days. Stay tuned in December. It will be a big news month for me. I'll probably blog a lot.

Organizing My Project - Last day of Revlimid

Today I'll take my last dose of Revlimid. I have to get labs and send them in. It shouldn't take too long. In the mean time, I've started working on my album project.

The hard part about my project is deciding what to concentrate on first. I have 5 albums worth of material but which should I pull out and use? Which are throw aways? I may only get the album out, what do I want it to be?

I spent Wednesday organizing the songs. First by thinking of local bands I could get to play them. The idea being: I'll pay for the studio time and they get a tune they can use on their next CD without having to pay royalties. I get a song I can use on my CD without having to pay for a studio and musicians.


On the other hand, I've also arranged them by feel putting them in groups like my favorite albums. Which is also challenging, because my favorite Albums are psychedelic concept albums and many of my tunes are Soul or R&B. One of my favorite albums of all time is Spirit: 12 Dreams of Dr. Sardonicus. That is an album you put on and listen from start to finish, a brilliant work of pacing and thematic unity. It has plenty of "preachy" songs, but the whole album comes off very positive and hopeful. A great model to use.

Another one is Blood Sweat and Tears' first Album: Child is Father to the Man. Another masterpiece of pacing, it is thematically, not as tight as TDODS but still a great album. It is kind of a psychedelic horn band album. The second album is also good, but not an album I put on and have to finish, I can play a few of the cuts and then be satisfied.

I love the Beatles Sgt. Pepper Album, Rubber Soul and Revolver, all well paced albums. Also Genesis' Duke. All are Albums I put on and listen in their entirety, when I listen.

So when I use these Albums, I use them for pacing. Thematically, most of my songs are only tangentially related, which of course is also the case with many of these albums. John Lennon said his songs had nothing to do with the SGT Pepper theme, they worked because they said they did. It's true.

But analyze and organize how I might, the question still boils down to: Where am I going to start?

That's the real question isn't it?

Last Two Days of Revlimid Trial

Well, I am on my last two days of Revlimid. It has been a largely uneventful journey. I have had minor reactions seemingly with no cause for their appearance or disappearance. The last few weeks have produced the biggest side-effects which are the blood leaving my fingers and neuropathy first in my left hand and now my right hand. Not bad, mind you, but noticeable and annoying while it is happening. Other side-effects have included little itchy bumps, like mosquito bites but much smaller, also a flush spreading over my face and upper chest, very mild again, but noticeable. All very minor in my opinion and well worth it if this stuff does the trick. The results however, will not be known for a month. I need to have a Bone Marrow Biopsy (which is the standard for used for evaluation in this trial). I'll have a CT scan up here which is actually my standard, because that is where it really showed up for me in the lymph nodes of my chest.

It's bee quite a journey and it was my intention to mark anniversary dates as they passed: date of my trip to the ER, date of the letter from the X-Ray at the ER, date of the CT, date of diagnosis, etc. I just threw away the Rx leaf where Dr. Dettro wrote down what the initial diagnosis was. He gave me three possibilities: Lymphoma (Hodgkin's or Non-Hodgkin's), Histoplasmosis, or Sarcoidosis. A lot has changed in that time. Dr. Dettro passed away, I've been to three major research hospitals for second opinions and I've learned stuff I wish I had learned earlier.

For instance, there is little question the treatment I should have gone with first was FCR. I was under the impression that FR was just as good and had less long term toxicity. That was just plain wrong. But the silver lining of that mistake was that when I had no response to FR, they started working me up for the Bone Marrow Transplant. I would not have known that I was a rare type and that the usual 3 month period to find a donor would be stretched out to 7 months: time which might make a difference in the future, we can't know yet.

In the mean time FCR knocked my lymph nodes back down to a manageable size (but didn't eliminate them.) My Dr. at MD Anderson thinks that this is probably scar tissue and that they will never shrink down to nothing again. So, as long as they don't grow, he isn't worried. He's the expert, of course. It feels good to have a doctor in whom you can have real faith. Which doesn't absolve me of my responsibility to learn about my disease, but it does let me trust him when I don't have enough facts. Doctor Keating is one of the foremost experts in the WORLD for my kind of Cancer. There are perhaps a couple handfuls of others with similar status.

I liken it to finding Bill Adam as a trumpet teacher. Among the many able and even the very great trumpet teachers, there are a handful of people who reach the "Guru" status. I was lucky enough to live close enough to study with one. I was also lucky enough (and it was mostly luck) that he was exactly what I needed. Sometimes even the great teachers just don't mesh with their students personalities. I am not the worlds greatest trumpet player by any means, but what I am now, I owe largely to having studied with Mr. Adam.

Anyway, during all this wool gathering, I decided I wasn't going to mark every little anniversary. Instead I was going to look forward and do things I hadn't yet done. So I now have an office/studio in Champaign. I'll be in the yellow pages soon. I have organized things I've had packed away since we moved to Champaign. I've sold all my live sound equipment. I've sold a major portion of my LP collection. I'll be recording a CD of original tunes soon. This will be my next major project. So if you ask me to play or work on another project and I seem reluctant or just outright refuse, please understand. The only more urgent need for me, is the need for steady income. This project is even more emotionally important to me than writing my dissertation. It is something I have put off too long.

If cancer interrupted my life (and it did) it also made me live it more urgently. I would suggest you start doing that too. No one lives forever. We all have an appointment with death which, delay it though we may, we all must keep.

One week Later...

Sorry, It’s been a while again since I posted. It’s honestly been an emotional rollercoaster this last month. I always get a little nervous before my next evaluation and this is no different. The nodes in my neck have never gone down. But to make matters worse, I got a little cold and they started to swell even more, which is disheartening when you are on a chemo regimen. They are down again now, so I guess it was the cold and not the cancer getting active.

I haven’t gotten the final numbers yet, but I think we did OK on the donor drive. I don’t think we quite made it to 100, but I do think we got close. The show was prime Doctor Wu and Tons O Fun was a wall of sound! I really felt good about doing that and I hope everyone who was there felt good about what we did. I don’t really want to have a transplant, but whether it comes to that or not, I’m glad to have made a difference.

On Friday I started the last week of the Clinical Trial. We had a gig so I ended up taking the medicine on the bandstand. The side effects are starting to bother me now. My fingers get really white and numb. My counts were down but have since come back up, but are still very low. My temperature is way below normal. For years I ran a very steady 98.6 and it only changed when I was sick. Now, I’m don’t have a steady temperature and it is sometimes over a degree lower (97.2-98).

Jazz 3 has their concert December 4 and I think they’ll be very well prepared. TOFB is performing on the WCIA early show on Friday at 8:00 AM. We’ll be playing Christmas songs from our Show at the Virginia Theater on December 5. So don’t forget to Tivo or video tape that. That is this Friday Morning at 8:00 (I’m not sure exactly what time we’re playing.) On WCIA channel 3. It will also be a preview of the Festival of Trees show we’ll do Saturday.

Very busy month. Lots of gigs and in the back of my mind is this gnawing, nagging question: Am I getting better? I won’t know until December.

Donor Drive and Concert - Today

Regarding the “Marrow for Tomorrow Concert” donor drive.

It is Today!!!
Sunday, November 9 from 4pm to 11pm
Canopy Club, 708 South Goodwin Avenue, Urbana
Park free in Krannert Center Parking Lot.


This drive is to find potential donors. So all you do is fill out a form and leave a cheek swab. If you match someone in need of a transplant, you would be asked to be tested more thoroughly. If you are a good match you would be asked to donate Peripheral blood stem cells or possibly some bone marrow (they don't do as many transplants using actual bone marrow anymore.) It is way less traumatic than donating, say a kidney. The PBSCs are taken in a process similar to dialysis (it is called Apheresis).

Some of you may know that they finally found a donor for me this Summer, who is a 9/10 match. I am putting of the transplant as long as I possibly can, so it may be years before I’ll need to take that step, depending on the results of my current clinical trial.

Others do not have that kind of time. A Bone marrow transplant can be a cure for some types of cancers. So those of you who have been patiently hoping and praying for a cure, can take a step to be a part of the cure.

I asked for this donor drive in lieu of another benefit concert for me. However, I did have to cut back working quite a bit. So, I would appreciate it if those of you who can, would bring an extra $20 for a copy of the Dr.Wu “Live at the Mark Cornell Cancer Benefit” that was recorded back at my benefit in January. I am feeling great, I am teaching Jazz 3 at Edison Middle School 1 hour every day. I have about 10 private students (and looking to pick up more.) I haven’t been able to take any extended tour gigs or gigs booked too far in the future, but Tons of fun Band has been working quite a bit. The boys in the band recorded this CD as a way to have an income to make up for when I couldn’t work. The truth is: we have yet to break even on the manufacturing costs. So please leave a cheek swab and buy a CD!
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For those of you who haven’t heard what it is yet :
Marrow for Tomorrow: Donor Drive Concert

Join the global movement to become a bone marrow donor—help the thousands looking for a life-saving donor match with just a simple cheek swab test—and during this special event, the National Marrow Donor Program is absorbing 100% of the cost of getting tested. The registry is particularly in need of donors with Black or African American, American Indian or Alaska Native, Asian, Native Hawaiian or other Pacific Islander, Hispanic or Latino, and mixed heritage backgrounds.

Musical Line-up
4pm The Tons ’O Fun Band
5:15pm Doxi
6:30pm Dr. Wu’s Rock & Soul Revue
7:45pm Weapons of Mass Disfunktion
9pm Connor Grant
10:15pm Stone Creek

And stick around after the music for a free showing of The 40-Year-Old Virgin starring Steve Carell.

National Marrow Donor Program

I just got a copy of the poster for Sunday's Marrow for Tomorrow Donor Drive.

Tell everyone you know about this great event. A simple cheek swab is all that it takes. And then you can enjoy free music from 4-11.

The Tons of Fun Band will play at 4:00, Doxi will play at 5:15, Doctor Wu will play at 6:30, Weapons of Mass Disfunktion will play at 7:45, Connor Grant at 9, and Stone Creek at 10:15.

It will be a wonderful night. I'll be pushing my CDs so remember to bring $20 for your copy.