Fludara Day 3

Got in a little after 9:00. Got right to work, no movies today. Worked on Jazz 3 stuff & Private Lessons stuff. Didn’t notice a time when they hooked me up and started the anti-nausea.

I got to bed late last night, so the anti-nausea meds really kicked my butt. Stopped working on my stuff, put in The Rolling Stones Rock & Roll Circus DVD closed my eyes and dozed. I didn't notice the time they started the Fludara, but it is out and I’m on the final rinse at 10:45. Pretty good considering how busy they are.

Went to the basement and picked up more reports from the medical records department. Those ladies down there do great work! I may start keeping track of my blood work, there is a website where you can download an Xcel form to keep track of it. But there is time to start doing that later. I need to catch up on the Jazz 3 stuff, cause I’m a little behind. Not much more today.

This round ends Friday; they start regular blood draws Monday. My next round begins the Monday after Thanksgiving (instead of that Friday). Then, I think we’re back on the Friday through Friday schedule.

The Nodes on my neck are gone, by the way, at least I can’t find them. I’ll be interested in seeing my next CT scans. I pray that there is no scarring in my lungs!

Got home by 11:20 went straight bed slept to about 1:30 and had Tristan get me a McDonald’s Salad. Tristan split to take a test in Mattoon, so I’m on my own till the boys come home.

Halloween tonight! Then the real Circus begins, metaphorically speaking.

Fludara Day 2

Got in a little after 9:00. They tell the pharmacy when I get in, then it’s a few minutes before the medicine comes up. Started at 9:40 with anti nausea. Rinse at 10:04 . Started Fludara around 10:14 then 10:58 rinse and I was out a little after 11:00.

Watched some SCTV, the episode with Southside Johnny and the Asbury Jukes. I always thought Southside Johnny was the best live band you never heard of. They reminded me of Dr.Wu. They never had any big hits, but I remember every time they were in a movie, and how great they sounded on SCTV; A band that truly made it "medium."

Dr.Wu always talked about how we’d made it medium. And that was certainly true for a band in our area , but I always thought that Dr.Wu could have made it higher up the medium chain, if we had been in an urban area. More gigs; more agents; more connections.

Then I watched some of the best of Tom Hanks on Saturday Night Live. I actually have work to do, but watching comedy keeps my mind off the poison I’m putting into my body.

Actually, I got antsy to work, so I shut off the movies and spent the last ½ hour organizing some Jazz 3 stuff. I am having auditions all this week. So kids, if you are reading this: PRACTICE!!!
I’m also organizing lesson times at my church. I’ve had to switch venues, but the times they let me have aren’t quite working the way I want. So I’ll need to see if there are any more times.

I start getting blood draws next Monday. I think I’ll do well, I feel strong as a horse, metaphorically speaking.

Another pretty easy day.

The truth is: I still feel great, considering how sick I am.
My energy was up today, I started my Bactrim which is an antibiotic, to prevent infection when my white counts go down.

I got to Christie a little after 9:00. They started my anti-nausea medicine (Zofran w/dexamethazone) at 9:31. Finished it at 9:50. Rinsed, then started the Fludara at 10:05 finished at 10:42 rinsed at 10:43 and was out around 11:00.

I'm at home now. The kids don't have school today, so we're cleaning. I'm getting ready to take the boys with me to get my anti-nausea prescription, then we'll go to the library.

When I get home, I'll get ready to teach lessons tonight.

So far, everything is proceeding as planned. It might be a little soon to say that I'll tolerate chemo well, but I think all indications are good. This may well be smooth sailing, metaphorically speaking.

The Weekend. Followed by Sean Connery.

The retreat was great. We did a little nature walk. We won a game of Cranium. Watched Ultimate Frisbee, I was a bit too tired to play. The guest speaker was Ben Woods from Slingshot57. He had a very well thought out and well articulated presentation.

No real side effects, unless this dull headache I’ve had all day today is one. I’m not sure how long the Rituxan takes to bind to the cells and then how long it takes the rest of the immune system to kill them, but I imagine it must take much longer than a couple days.

I start Fludarabine tomorrow. I’m a little nervous, which is why I’m up writing instead of sleeping. When I get nervous I give myself the “What are you prepared to do” speech from The Untouchables (1987, Brian De Palma Director, David Mamet screen play).

Malone: You said you wanted to get Capone. Do you really wanna get him? You see what I'm saying is, what are you prepared to do?
Ness: Anything within the law.
Malone: And then what are you prepared to do? If you open the can on these worms you must be prepared to go all the way. Because they're not gonna give up the fight, until one of you is dead.
Ness: I want to get Capone! I don't know how to do it.
Malone: You wanna know how to get Capone? They pull a knife, you pull a gun. He sends one of yours to the hospital, you send one of his to the morgue. That's the Chicago way! And that's how you get Capone. Now do you want to do that? Are you ready to do that? I'm offering you a deal. Do you want this deal?
Ness: I have sworn to capture this man with all legal powers at my disposal and I will do so.
Malone: Well, the Lord hates a coward.
[jabs Ness with his hand, and Ness shakes it]
Malone: Do you know what a blood oath is, Mr. Ness?
Ness: Yes.
Malone: Good, 'cause you just took one.

I teach kids all the time who say they want to get better, but are entirely unprepared and unwilling to do the actual work it takes to get better. I give them this speech. It is, in my opinion, one of the best lessons about life ever presented in a movie. How bad do you really want something? Are you really prepared to do everything it takes to accomplish it? And are you prepared to fail? Because even if you do everything, there is still no guarantee of success. Are you prepared to keep trying until your dying breath, if that’s what it takes? Some people aren’t, and when you talk about playing a musical instrument, well, that’s OK. Sometimes finding out what isn’t your passion is an important step to finding what is.

But, I have to ask myself what am I prepared to do, to beat this?
Whatever it takes.

I promised no soul searching in this Blog. But sometimes, putting a commitment in writing is a powerful form of personal motivation. So, skip this installment if you want. It’s really for me anyway, and you folks are just looking over my shoulder, metaphorically speaking.

Of Mice & Men

So I'm writing this in the chemo chair, a nice comfy seat. Came in at 9:00 started benedryl around 9:20 . They started rituximab at 10:18.
Now the real battle begins. Finished at 2:41.
No Problems, drank a lot of iced tea, ate a McDonald's salad and watched a couple movies.

Rituximab: the mab stands for monoclonal anti-bodies. They are humanized mouse antibodies that target the b cells specifically. No side effects for me, but I do have a craving to buy a cheese ball on the way home....

Jana & I are going to go on the WRCC worship retreat this weekend at Eagle Creek. It should be a real mountaintop experience, metaphorically speaking.

Just another normal day before the battle.

I spent today picking up more lab results. I have the Flow Cytometry results, I may post them when I have more information on what they might mean. In this, I have some time to learn. How aggressive my disease may turn in the future doesn't affect the treatment now, according to most of the research I've done. It does affect how closely I monitor myself after it goes into remission, however . It also can affect future treatment choices; some things might need a little preparation on my end.

I went to the University and let a few people know that I start chemo tomorrow. I also brought my CAT scan and showed them the masses in my chest. It's kind of cool to watch the animation.

Taught lessons.
Went to my boys' cub scout pack meeting tonight.

Now I start preparing for tomorrow. I have to teach Jazz 3 at 7:00. Then I'll go home and have Tristan drive me to Christie for my first treatment, which takes the longest, so then I can call him and have him bring me lunch later.

Thanks to everyone for your support. Please keep informing my friends of my condition. It is an awkward conversation when I have to tell them myself. They ask a simple polite question, "how are you?" and then I have to say, "Well, that's a little complicated..."

Direct them, to this blog and if they wish to communicate , I am more than happy to hear from them. I just heard from one of my oldest friends today. We've known each other since grade school, and he sent a picture of a party, I'm not sure I ever saw before. It was totally cool!

In fact, the outpouring good wishes has been really overwhelming. But now it is time to step into the arena about which Teddy Roosevelt was metaphorically speaking.




Man proposes, God disposes.

New Profile Picture and Other Mysteries!

I just changed my profile picture; this is the picture that proves that I did, at one time, actually have hair. Only my long time friends and family knew me when I had hair; people with whom I am acquainted professionally never knew me with hair. When my hair falls out from chemo, no one will notice now, of course.

I had some labs done today and, as usual, the Christie phlebotomist was excellent. I didn’t feel a thing. I talked at length to my surgeon, plying him with questions about how the port worked and what keeps it from leaking and why it doesn’t pull out. He was extremely helpful.

The PET scan from the other day showed absolutely nothing. Which is good: it means I don’t have a fast growing tumor somewhere else. It is also bad, because it didn’t even show the ones I have. So we’ll never do that test again. It’ll just be CT Scans and Bone Marrow biopsies, I guess. However, it does confirm that this is a low grade lymphoma; it is not growing that much faster than a normal cell. Unfortunately, that is also what makes this kind of lymphoma so hard to treat and so likely to come back.

I have a CD of my last CT scan as well as my PET scan. If I can figure out a way to do it, I’ll post a couple pictures online, because a before and after picture will be very good.

I also asked my oncologist about how widespread the bone marrow involvement was. He said it is more of a yes or no question, "Is it there or not?" But if it were widespread through the bone marrow, it would be showing up in my blood, and as of yet, it isn’t. So, I tend to think that is good, even though it is technically stage IV. When I asked him about that, he said we really don’t worry more if it is stage IV, the treatment is the same. I had my doubts about that, but the Dr. at Barnes said something similar.

They also classify Lymphoma stages by A & B symptoms: fever, night sweats & weight loss being some B symptoms (IVa or IVb). I had fever and night sweats back in January & February and I’ve certainly lost weight. But I don’t have those now and I was trying to lose weight, easy though it was to do. Since I learned of my diagnosis, I stopped losing and even put on a pound. So, I doubt that I have the B symptoms and the Dr. at Barnes was skeptical also. Anyway, I still think I have a lot of factors in my favor.

- - - JARGON ALERT - - -

The big thing I don’t know is the results of some of the biomarker tests, for example: the biomarker 17p or p53 mutations are reliable indicators of progressive disease. I don't know if he did those tests yet, but I am going to request it. The ZAP70 test, which was done, indicated my disease could change to a more aggressive form but, it is a less reliable indicator after the disease has progressed to the point of needing treatment.


This was a long rambling post, I know. But I had to get some of this off my chest, metaphorically speaking.

Chemotherapy

Well, I talked to my oncologist today and we have decided on a treatment plan. I start Chemotherapy this Friday. They will give me the regimen know as FR. The F stands for Fludarabine (trade name Fludara). The R stands for Rituximab (trade name Rituxan). Although Cyclophosphamide (trade name Cytoxan) is common in this regimen (FCR), we decided to omit it.

I will be getting the Rituxan the first day of my Cycle (Friday) followed by one week (Monday through Friday) of Fludarabine then three weeks off. So basically, I am on 6 days out of every 28.

We will do 2 rounds then evaluate, then do 2 more rounds and evaluate. This will continue until we reach a “maximum response.” Then we’ll do 2 more rounds and it will be over.
So I’m looking at: at least 6 months assuming a 100% response after the first round. If it takes longer, then it takes longer.

I don’t have much more to write tonight. I have the opinion of two doctors who each have made similar recommendations and I’m convinced this is the best course of action in my situation.

Man proposes, God disposes.

Tell It Like It Is...

Should you tell anyone?

The way I see it, in my case, this is not a big secret. I understand why many of you might think this is personal, private and not really to be shared without permission. And in some circumstances that might be the best way to handle it. For instance, I didn’t want the word out until:
1. I knew for sure what the diagnosis was; and...
2. I had told everyone who needed to hear it directly from me.

Beyond that, however, my case is:
My career really depends on word of mouth. So, since I‘m not big enough to hire a press agent, I started this blog. The larger the network reading it, the better for me, professionally. The only way to let people know for sure that they can depend on me is to be up front with them.
I will continue to teach private lessons and recruit private students.
I will continue to teach Edison Jazz 3.
I will continue to play with Tons of Fun, (although if I keep losing weight, they may have to start calling it: Slightly Under a Ton of Fun.)
However, I have backed out of all other playing commitments for the time being. (I had to cancel a couple great Sammy Kaye Tours! As well as 2 other extremely promising projects.)

When I am strong enough to start playing heavily again I will announce it here. So, by all means, tell people to check out this blog.

Send out emails with this blog's address to every musician or friend you know.

I am not quitting, I am not retiring and I am NOT speaking metaphorically!

I will beat this disease.



Man proposes, God disposes.

SLL/CLL: the short form.

This is not a primer, there are great sites if you really want to know the details of my cancer. This is the "short form." So you all can get a basic idea of how it will progress.

What “they” say:
This is the “good cancer” to have. (No kidding, they really say that.) Presumably because it is not fast growing.
It’s an old man’s disease. The median age at diagnosis is 72 yrs and predominantly among white males. The median age at death is 78 years (according to the SEER website). This skews all the statistics that could be meaningful to me. (5-6 yr survival at 72yrs is much different than 5-6 yrs. At 40!)

Other facts:
CLL is the most common form of adult Leukemia. (But I have SLL, my blood is good so far.)

There is no cure. OK, there is a cure, a bone marrow transplant, but the survival rate from the cure is worse than the survival rate from the disease. Again these statistics may be skewed because it is the last option not the first.

It is treatable. There are several chemotherapy agents that can send it into remission. It is hard to predict how long the remission will continue.

It usually recurs at some point. When it recurs, it is usually less responsive to chemo. I am still learning about the genetic tests they do to predict risk factors. But it seems there are variations even within the same disease. So, occasionally this disease mutates into a more aggressive form, but some people have it for 10-30 years and it never progresses to a point to require treatment (which is what makes the cure and sometimes even treatment so unattractive).


My Case:
Mine has obviously passed the point of non-treatment. I am still learning about remission rates and reliable predictors of lengths of remission and resistance to chemotherapy, but it is a little soon for me to be worrying about a stem cell (bone marrow) transplant. Thanks to all who have volunteered to donate, though. (Pretty much my entire Dr.Wu family.) My first course of action is to follow the regimen my oncologist prescribed and see how long we can induce remission. My initial impression of my oncologist was that he was well informed on the latest regimens and my trip to St. Louis confirms that. My appointment at Barnes was very informative, it gave me a couple questions to ask him.

What's important:
As important as the health issue is, however, the best part of the day was spending it alone with Jana. We haven’t had a day by ourselves for a long time. Sometimes, it is the crisis situations that really make you appreciate the important things. Dad used to say that life was like a big store, where someone had come and covered the price tags with different ones: putting a high value on worthless things and low prices on the truly valuable. Crises make us look under the false price tags, metaphorically speaking.

St. Louis

I didn’t have time to write yesterday, but I did have a PET scan. Technology is awesome. Having Cancer in 2007 is way better than having cancer in say, 1907. They gave me a CD so I can see my insides.

The good news I got on Wednesday was an appointment today (Friday) at the Siteman Cancer Center at Barnes Jewish Hospital in St. Louis. My Mother generously offered to watch the kids, it being a school night, we definitely needed the extra help. So we left Thursday evening and stayed over night with my Dad’s cousin Max and his wife Daisy. (For those of you into genealogy that makes him my 1st cousin once removed.) It’s good to have a big family. Max and Daisy were very gracious and fixed us a nice late night snack as well as a great breakfast.

We got to Barnes around 7:45 AM and went to the Siteman Center on the 7th Floor. They drew blood for labs and used my port for the first time. Again, technology is cool. We had a short wait and then saw the Dr. We spent about an hour in consultation as he looked at the now legendary CAT scans, lab reports, heard my version of my health history over the last year and basically confirmed everything my Oncologist had told me.

I have Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia. SLL and CLL are basically the same disease; it is the same cell. When it is mainly in the Lymph system it is SLL. When it is in the blood it is CLL.

When we got done at Barnes, it was still early so we went to Grant's Farm and saw the Clydesdales. Then walked to White Haven National Historic Site right next door. For those of you in the 33rd regiment band, they remembered you fondly. That was a trip I hated to miss.

Well. It’s been along day. I’ll be sleeping like a log tonight, metaphorically speaking.

It's called a Port, but it's not wine.

Went in first thing this morning (read 6:00 AM) to get my Port inserted. Surgery is never “easy” but on the grand scale this was relatively minor. The thing that kicked my butt was the I.V. sedation. I was loopy all day. I called the oncologist’s office, then forgot and called again. The phone rang off the hook. I’d take notes then forget where I put them. I’d ask the same question 2 or 3 times and write the answer down every time. It funny to read them now.

Tomorrow I get the PET Scan, so due to the dietary restrictions I took my wife out to the Outback Steakhouse, one of my favorite places. Because of the way the PET scan works, having carbohydrates or sugars is out. The good news: steak is in. Also, they say you should have all your food fully cooked after you start chemo; so I enjoyed my last, tender, medium-rare steak for a while. True, I had to forgo the potatoes, but I had sautéed mushrooms instead. Mmmm, good.

Some good news today, but I’ll share that tomorrow or Friday.

Besides, at this point, my mind is like a sieve, metaphorically speaking.

Are you Breathing?

Great meeting with my oncologist today. He gave it to me straight. He said it can’t get worse, it is in my bone marrow. Most of the lymph nodes in my chest are the size of small grapes that for all practical purposes have formed a single mass. He said he wasn’t sure how I was able to breathe. But my students and I do know don’t we? Now are you guys going to start practicing those breathing exercises? The trumpet (and every other brass instrument) is a wind instrument. Breathing in and breathing out are the key to our success as players.

That being said, I can tell a difference, I used to have a rather large reservoir of air to use for those extended lead lines. In fact one of the early nights on the cruise ship, our guest Entertainer, before she even gave the downbeat, saw that I was new and said she liked her lead players to have lots of “cojones.” She turned around after the first song and smiled and said, that’s the kind of "cojones" I like. (I don’t think she was flirting, she was 65 if she was a day.) At the show that night she held out the last note of the show an insanely long time and when she finally cut off the band, the lead tenor player turned around with his mouth wide open and went “YEAH!”

So, as I said in my very first blog, I am just physically unable to do that now. Another sign is given by the incentive spirometer they give everyone who has surgery. I used to be able to breathe in and move it all the way to the top and in the same breath hold it there for several seconds. Now, I top out at 3750 ml, which is the line below the top on my wife’s 4000 ml device. But still as good as most people (if you’ve had surgery, try it with the one you have at home.) Your device may be smaller or larger. If you have one for children, don’t get too excited if you can hold it at the top for a long time; look at the measurements. Trumpet players: try it at home and post your results in the comments section.

Why a trumpet lesson on my cancer Blog? Why not? I hope my students are reading this and setting goals for themselves. Nothing has changed, except my short term goal: to beat this disease.

My larger goals: to be a great Christian, Husband, Father, Teacher and Trumpet player are the same whether I am 30 or 40 or 70, whether I have 30 years or 30 days.

Later this week I get my second opinion, and I could begin treatment as soon as Friday. Once those masses start shrinking and I start getting some of my old lung capacity back, watch. I am going to take out my horn again raise the roof, metaphorically speaking.

Second Opinions

Busy day today. Had my Echocardiogram: cakewalk. But, I spent most of the morning running around collecting my health records for a second opinion. Everyone to whom I’ve spoken, has recommended this. I spent a good half hour on the line with a woman from the Leukemia & Lymphoma Society and she said it at least five times.

The conversation went something like:
Me: What about this…
Her: That is why a second opinion is so important.
Rinse; Repeat...

And, in conversations I’ve had with others who have been through Cancer, this has been the recurrent theme: Always get a second opinion. And since they’ve been through it successfully and I haven’t yet, I’m taking their word for it. A consensus is a good thing.

Now my next decision: where to go for Second opinion and or treatment. I’ve been in contact with a sax player/lymphoma survivor who gives his highest recommendation to MD Anderson Cancer Center in Houston. Then an old High School/Church friend called today and told me of his successful treatment at Barnes Hospital in St. Louis. But neither of them had my specific type of lymphoma. (Which, by the way, I’m not giving that information online yet. I want to be sure before I say anything.)

It’s funny to be preparing for a second opinion when I don’t even have the totality of the first opinion. I still have the PET scan on Thursday before my oncologist recommends a treatment plan, although he has called me in for an extra appointment on Tuesday.

Still, it makes me feel better to know that it is a standard course of action and not a new stage of denial. (The former being pro-active, the latter being non-active.) I want all the opinions in so I can begin treatment and start kicking this thing’s butt, metaphorically speaking!

Running out of unused veins...

Well today was a picnic compared to yesterday. Another CAT scan.

I’ve told almost everyone my diagnosis now. The news is public and you may steer my friends to this Blog. I kept it on the DL until I had a sure diagnosis and I could tell my students, I wanted them to hear it from me. But now you may tell anyone you think may be interested.

In fact, be sure to tell my friends. Your prayers are welcome. Email me at the address on my profile page.

Gotta think of a "hook" to end these blogs with.

Bone Marrow

OK, I admit I didn't look at the instrument they used.
I couldn't have looked if I had wanted to: I was on my belly. They took it from the left collar of my hip bone, the part close to the surface. They numbed the area, I had a slight reaction to the local (hot flash and slight nausea). After I was sufficiently cooled down and the anaesthetic had kicked in, he poked me. The pressure was OK, but uncomfortable. But when he actually drew up the marrow.....Wow. It reminded me of when I broke my leg, but without the twisting and cracking.

Hope I haven't been too graphic here, in case some of my students are reading. But, we all know the indignities of being in a hospital with your bare butt hanging out. The worst part for me was the local.

I talked a little more to the oncologist, he gave me some encouragement. The Nurses were great. My wife held my hand and the nurse patted my leg. But I don't think they appreciated my bare butt jokes. The phlebotomist was wonderful. Christie has at least 2 phlebotomists who only need to stick you once! Good Show! Even the EKG girl didn't rip my chest hair off.

Now before I get too chatty, My CAT Scan is tomorrow. I get my port catheter next Wednesday the 17th of October. I get a PET scan that Thursday and I'll see the Oncologist again to review treatment and probably start early that next week of the 21st.

Keep me in your thoughts and prayers. from here on out it is all unknown territory to me. But I'll leave you with a quote from Lance Armstrong 7 time winner of the Tour de France (after surviving cancer in his Testicles, Lungs and Brain.)

"Pain is temporary, it may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever. "- LANCE ARMSTRONG -

Official Diagnosis

This is my official health blog. At the present I'm not sure I want to share too much personal information out in the open like this. So, until I can find a way to only let people I know view it, I'll just give the basics.

It is official, I have lymphoma. Well, good! At last, a diagnosis. I've been feeling wrong for so long, I'd gotten used to it.

Now we begin staging:
Tomorrow: Bone Marrow Biopsy.
Friday: CAT scan.
Next Thursday at the latest: PET Scan.
I'm trying to schedule the PET scan at a different hospital so I can get in earlier. I'll talk to the oncologist about it tomorrow.

The point is they have to know how far the disease has progressed, so that they can tell whether it is getting better or worse when they are treating it. We decide on a treatment plan as soon as they have established the extent of the disease.


Played a gig tonight, I did OK, but I can tell I'm weaker. Things that used to sail out, are barely making it if at all.



Best wishes to you all.