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Archive for June, 2011

Last time, this round!

Today is treatment day.  It’s an odd feeling that’s hard to describe.  On one hand I’m excited that I’m receiving treatment and doing something proactive to get better.  On the other hand, it’s kind of hard to get excited about receiving Chemo.  The good news here, of course, is that we don’t have to go to San Antonio any more!

Today I want to talk about something that we haven’t really brought up.  The survivability of this cancer.

Practically everyone we’ve talked to has had a different opinion on the survivability of this cancer.  When the doctors lump me in with the patients that have Pancreatic Cancer, it’s pretty grim.  Odds are close to 90% that a patient with Pancreatic Cancer will, even after surgery and treatment, have a cancer come back within 5 years.  When it does it is particularly aggressive.

Here’s the key; I don’t have Pancreatic Cancer.  My cancer is Ampullary.  The Ampulla of Vater is the duct that runs from the pancreas to the small intestine.  In a study I ready by the School of Medicine at UCLA (I may have that wrong, it might have been USC, I don’t remember) only 0.02% of the cancers diagnosed each year are Ampullary.  So what does that mean.  Frankly, it means nobody knows!

Because so few patients are diagnosed with this type of cancer, there is no research done on it.  Not only is it too hard to research because it’s so hard to find test subjects, but even if you do, there’s not enough money to be made in finding adequate treatment.  Cancers like, Breast, Colon, Prostate which are much more common are the ones that get the research dollars.  Don’t get me wrong, I completely understand.  I would direct the monies in the same way.  But the bottom line is that they just have no idea what the real prognosis is going to be so they just lump it in with Pancreatic Cancer.

When I was disqualified for the research study, the doctor running the study told me that patients with Pancreatic Cancer have close to a 90% chance of reoccurrence.  His hope was that with the vaccine he was developing that he might be able to reduce that to only 30%.  I was disqualified because, according to him, my cancer only had a 30% chance of recurrence anyway.  I could completely skew the results of the study.  The bottom line is that they have no idea what’s going to happen.  Nobody has ever taken the time, money or energy to find out.

The other day I was talking to Lisa about this.  I told her that truthfully, I may have 6 months left, or I could have 50 years left.  I believe that’s true for everyone.  There is very little doubt in my mind that I will still be here for close to another 50 years.  Lisa says that’s because I’m the most stubborn person she’s ever met.  Maybe that it.  Maybe it’s just that I have faith that God’s not done with me yet.

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No more trips to San Antonio!!!!

We finally got things worked out with an Oncologist here in Corpus Christi!!  I will start receiving my treatments here on Tuesday.  That means no more commuting to San Antonio each week!

When I was originally diagnosed with Cancer, we immediately tried to get into M.D. Anderson in Houston.  If you’re not familiar with M.D. Anderson, it is the top rated Cancer Treatment and Research Facility in the U.S.   Unfortunately, because the V.A. was paying my way, M.D. Anderson said NO!  You see, the V.A. has such a terrible reputation for paying their bills that many facilities and doctors would prefer not to accept those patients at all.  Fortunately we found the Cancer Therapy and Research Center (CTRC) in San Antonio.  It is part of the University of Texas at San Antonio.  Best of all, it’s one of the top 3 rated Cancer centers in the State of Texas.

My surgeons came from CTRC.  I can tell you, I would not have changed a thing where that was concerned.  My surgeons were fantastic.  I can not say enough about them.  If every there comes a time again where I need some God-Awful abdominal surgery, those are the guys I want doing it!

After surgery, and while  was still in the hospital I met some of the Oncologists from CTRC.  We talked about treatment in very general terms.  I explained to them how I felt about treatment and what I wanted.  I told them that I am young (I’m 44 years old) and I’m otherwise healthy.  I want them to be as aggressive as they possibly can be to get rid of anything that was missed in surgery.  More than anything else I dont’ want to be back here in 2 years because something new has popped up.  Lets go after it now and get it the first time!  The Doctors smiled at me, with that “Oh boy!! This is going to be a fun one” look they get when they’re given free rein.  More than anything else, they agreed with everything I said and convinced me that CTRC was where I needed to get my treatment.

Now, let’s fast forward a month or so.  I actually go to CTRC to meet my Oncologist.  I’m asked to participate in a clinical study.  They’re trying to develop a vaccine for Pancreatic Cancer.  I’m thinking, “This is exactly why I decided to stay at CTRC!!!”  I did, however find a Radiation Oncologist in Corpus Christi.  Once those treatments start, they’re every day.  There is no way I’m going to commute or worse yet, live in San Antonio (away from my wife and kids!) for almost 2 months.

As many of you already know, I was disqualified for the study.  It was a little funny, it seemed to come as a great revelation to them that I don’t have Pancreatic Cancer.  I knew that.  My cancer is similar, but is actually Ampullary, not Pancreatic.  Once I was disqualified I started doing even more research.  I found that my course of treatment (without the vaccine) was exactly the same at CTRC as it would be anywhere else.  Even Bob’s Tire and Lube and Cancer Shop would treat it exactly the same way.  So with that in mind, why am I commuting 3 hours, each way once a week?

Friday I met my new Oncologist.  Dr. Aftab Mahmood.  He is at Cancer Specialists of South Texas (That’s the one on Rodd Field Road, for those of you in the area).  I really like this guy.  He’s young, I can understand everything he says.  Best off, he actually has a personality.  I genuinely feel that I’m in good hands.

Dr. Mahmood says that I can start my Chemo immediately.  That means that Tuesday, instead of getting up and packing up the car for any sort of contingency or emergency (That’s really Lisa’s doing.  I’m more “seat of the pants”, but that’s not really a surprise, is it?) then driving all day.  Instead of that, we’ll drive 20 – 25 minutes to the Cancer Center and be home within 2 hours!!!!!

…and the adventure continues.

It’s Tuesday morning and today is supposed to be the second dose of my first round of Chemo.  That means that about 9:00 this morning Lisa and I will drive to San Antonio.  Except that it makes for a long day, it’s really not that big of a deal anymore.  I’m a little unsure about how today’s going to work though.  I have a cold.

When I check in to CTRC the first thing they do are blood tests.  The want to check everything and make sure that my blood counts are where they should be before they give me drugs that are going to totally knock them out of whack.  The problem is the Chemo drugs knock down your body’s resistance to infections.  Since I already have a cold, what are they going to do?

A cold is a virus, not an infection.  Maybe they proceed anyway?  Maybe they just pump me full of IV antibiotics to try and kill off all the germs.  Maybe they admit me to the hospital until they can safely give me chemo.  I just don’t know what the answer is.  I guess I’ll know in a few hours.

One down!

It’s Friday Morning and I’m almost through my first week after starting Chemo.  It’s been a crazy ride this week!

Lets start with Monday Morning…  Lisa and I are driving to San Antonio so that I can start my chemo.  We were about 15 – 20 miles outside of San Antonio when my phone rang.  It’s CTRC (Cancer Therapy and Research Center) to tell me that I’m not going to be able to start Chemo this morning.  It turns out there’s a billing problem.

I immediately see red!  First off, I’ve been going to CTRC since April.  Surely they could have worked this our before.  On top of that, I had already been driving for a little over 2 hours when they called me.  I was pretty sure I was going to try to find an Oncologist in Corpus Christi, but this really sealed it for me.  Lisa immediately got on the phone with the VA.  I got on the phone with CTRC and within an hour we had the two of them talking and got things worked out.  In the mean time Lisa and I were sitting in a Burger King not sure if we should go home or proceed to San Antonio.

Once we got to CTRC it was fairly uneventful.  Once they start giving me Chemo, it only takes half an hour.  I wait longer for the blood tests results to come back than anything.  It’s all very comfortable though.  The people are wonderful ,the recliners we sit in are very comfortable.  Best of all, in my mind we’re moving forward.

The ride back to Corpus Christi was uneventful too.  I was just about ready to chalk this whole Chemo thing up as a piece of cake when it hit me (about 8:30 or 9:00 that night).  I’m not sure I can describe the feeling..The sensation was as if the whole room were spinning.  It only lasted about 15 – 20 minutes, but I was sure that if this continued for a while it was not going to end well.

The next morning I felt OK, just weak.  I managed to be a productive member of society, I just moved a little slower than usual.  That night I even managed to run a music rehearsal for the cast of The Producers.  I’ll admit, I was wiped out afterwards.

Wednesday Morning I woke up relatively early because I had to see my Radiation Oncologist.  Wednesday was my “Fitting”.  They create this form-fitting pillow that will cause you to lie on the machine the exact same way each time.  They also marked up most of my body with black magic marker.  That way they can line me up in the machine a little easier.  Then top it all off, I got three little tattoos.  The tattoos are in case the magic marker comes off.  That way they will always be able to tell how I should line up.

I had a talk with Dr. Stewart (My radiation oncologist), I explained to her that I really needed to find a medical oncologist in Corpus Christi.  She agreed to help me find one.  I’ll tell you, this is one of the reasons I really love Dr. Stewart:  Once she found a Doctor for me, she didn’t have one of her nurses call me.  Dr. Stewart actually called me herself.

Wednesday afternoon I developed a fever.  Now Lisa and Rachel and the entire cast of “Full Monty” as well as the cast of “The Producers” have all been sick.  I’ve done everything I could to avoid it, but you can’t forever.  I wasn’t too worried, but my instructions were to call if I ever develop a fever of over 101.  I was at 101.6.  I called several numbers at CTRC and kept getting voice mail.  Eventually I just went ahead and called Dr. Mahalingham’s cell phone.

The doctor told me that he didn’t actually believe that my blood counts would drop that quickly.  After all, I only had one treatment so far.  He did think that this was worth watching.  He told me to take 2 Tylenol and see if the fever dropped.  If it didn’t then I had to got to the emergency room.  Fortunately it did drop and I didn’t have to go to the hospital.  It spiked once or twice more during the night, but then it was over.  In the morning I got a call from my nurse at CTRC.  She also told me that if it came back at all during the day I was to go directly to the Emergency Room.  Fortunately it never did.

I did really feel run down all day yesterday.  I attributed that to the fevers and general crud.  At the end of the day, I finally forced myself to sit down and have a meal.  I had really lost my appetite all day.  Strangely, once I was done eating I felt better.  That’s when it occurred to me that my blood sugar had bottomed out.

You know, between the surgery, the chemo, the crud, the emotional anxiety involved with all of this; it’s really hard to tell sometimes what the causes are for feeling poorly.  As it turns out, this was a lesson I learned (or thought I had) right after surgery.  I’ve got to keep eating or I’ll feel bad.

Well it’s Friday Morning and it’s time to get ready for work.  This weekend, as all of them are, is really busy.  That’s why I’m taking Chemo early in the week.  So that I can make it through the weekends.

If you’re in town, come see the Full Monty at the Aurora Arts Theater.  The show it terrific and we still have plenty of seats left this weekend.  Don’t wait though, there are only 3 more weeks to see this show!!  Let me know if you need tickets.

Yard Work Play List

So I spent a lot of time yesterday pulling weeds, staking my tomato plants, Preening and treating ant piles, etc…..and nothing makes the days work go faster than my free internet radio from PANDORA. For those unfamiliar, you make your own “stations”. I have an Aerosmith station, Def Leopard, Norah Jones, Pink, Tim McGraw, etc…..and they play music from that artist plus others they think you might like. If it plays a song you don’t care for, give it a thumbs down and it will never play that song on that station ever again. I really like it, especially since I have it on my Blackberry, and yesterday my Yard Work Playlist included some fun music I am sharing here! Enjoy!

 

And we round it out with some VINTAGE MADONNA!

Some good news!

I know that last week Lisa posted about our delay in treatment.  I got an update on that as well as some very welcome news along with it!

The reason that we had the delay in the first part was because of the clinical trial that I agreed to participate in.  In this trial they are developing a vaccine for Pancreatic Cancer.  I won’t go into the specifics now, but the whole thing is fascinating. Apparently though this vaccine needs to be administered one week before Chemo starts.  So that pushed us back a little.  In addition to that this is phase 3 (of 3) of the study.  This is the one that is presented to the FDA for approval before commercialization of the drug. Because the FDA strictly scrutinizes this particular aspect of the study, they are very particular about whom the allow as a subject.

Yesterday I received a call from my Oncologist (He’s also the one leading this study).  He old me that they had done a thorough review of my medical records and have determined that I’m not a candidate for this study.  You see, they are developing a vaccine for pancreatic cancer.  I don’t have pancreatic cancer.  I have Ampullary Cancer.  Although they are similar, they are different.

The Ampulla is somewhat similar to your body’s bile duct.  Bile ducts come from the Gall Bladder and the Liver, the Ampulla comes from the Pancreas.  Because this particular type of cancer is so rare, it doesn’t get its own classification.  It simply just gets lumped in with the pancreatic type.  Biologically though the two type of tumors are very different.  The Ampullary tumor is far less aggressive than the Pancreatic tumor.

According to Devalingam Mahalingam, M.D., Ph.D, my new oncologist, the rate of recurrence for Amullary Cancer, without Chemo and Radiation is only about 30%.  In fact, there are no clinical studies on Ampullary Cancer to even suggest that Chemo and Radiation reduce the chance of reoccurrence.  In my mind, that all very good news.  I have to be honest, the odds the doctors were giving us prior to yesterday were not anywhere as good as this.

Dr. Mahalingam did say that the treatment for both Pancreatic and Apullary tumors are identical.  He went on to say that in his clinical opinion I should go ahead and submit to Chemo and Radiation.  I am in total agreement.  So I will begin on Monday afternoon.

From my perspective this is simply affirming what I’ve believed all along.  Once this treatment is over, I get to return to my regular life again!  There is definitely a light at the end of the tunnel.

I have said many times, “God isn’t done with me yet.  I’ve got way too much to do!”

LDE is Getting Off the Ground!

What a great couple of days for Little Dog Entertainment! Our meet and greet went GREAT….actually….way better than I had expected. We ended the day with SEVERAL booked gigs for Paul and a few other groups we represent. We sold a 4th of July show to the retirement centers…..how can you NOT love a flute playing Stars and Stripes Forever on the 4th of July!! Best of all he isn’t a “budget breaker” so our Activities Coordinators LOVE that!

But it was a thing of beauty I have to say…….strolling out of there with them calling behind us  “be sure to send us an invoice”…..music to my EARS! And music for THEIR ears too! It was just awesome! Yes, yes….I know I get a thrill from the close….I know I do……I know it makes me happy knowing there are more pennies hitting my bank account…..but the best part of the entire thing was seeing their eyes LIGHT UP when we spoke to them….the realization that these 2 people are here to HELP me? Make my job EASIER? and you can see it in their eyes…..they are going to look like a GENIUS to their GM! They love the idea of getting their residents more VARIETY and it doesn’t cost any more than what they are already spending…..

it’s GENIUS I tell you…..GENIUS!

And this is just the beginning……we have so many people to talk to! Funeral directors, event planners, chambers of commerce…..the list of potential clients is endless……even individuals looking for a band for a party or a barbershop quartet for a birthday party….we have it!

I am falling in love……..with MY JOB!

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