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I’ve made up my mind!

You know, I posted a question on Facebook this evening.  I asked everyone’s opinion on whether I should shave my head now or wait a couple of weeks until chemo makes my hair fall out.  For the record, the drugs I’m going to get almost always make your hair fall out.

I think anyone that has seen a recent picture of me (There’s one as my profile picture) will know that my hair isn’t important to me.  One of my favorite jokes has been telling everyone how upset I am that Chemo is going to make me loose my hair.  It’s with this in mind that I have decided to go ahead an shave my head now.  I don’t mind the thought of shaving every day.  I may even keep it shaved well after I’m done with all of my treatments.

Now, I will admit; I don’t feel the same about my goatee.  I really am a little nervous about loosing it.  I’m going to do every thing I can to keep it.  If I can’t, I know it will grow back.  But Lisa hasn’t seen me without it (or a full beard) since High School!

I will post pictures before during (Yes Ron I’ll even post one with only half of it gone) and after!  Be on the lookout.

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Life keeps moving

Before Lisa and got married I was living in Rockport (TX) and Lisa was still in the Cincinnati area.   When I went to visit her for the first time, it was almost 10 years since I had last set foot in Ohio.  It was almost surreal.  I mean here was the town I grew up in and knew backwards and forwards.  Yet everything looked different.  In my old neighborhood there were stores that didn’t exist when I last lived there.  I remember vividly trying to find the Busy Bee Restaurant on Ludlow Ave (Does anyone else remember that place?), but it was gone.  I realized I was a visitor.

There are a few similarities from that story to where we are today.  No, I’m not referring to the sign that says that they are going to build an IHOP in Portland.  What I mean is that even though everything in my life seems to have come to a standstill, things are still happening without me.

We all know the old adage in show business; “The Show Must Go On!”  I’m a Musician (That’s showbiz, right?)  I can’t even count the number of times that “So and so” didn’t show up and we just went on without them.  The difference was that it was never me in the past.  I can’t help but feel a sense of irrelevance.

OK, I know that a certain amount of this is nerves.  I’m not afraid of what I’m about to go through.  I think the most of it is that I really love the way my life has turned out.  I love my family.  I love my church family.  I love my theater family.  I love all the cool things that I get to do.  I don’t want to take a break from it.  I want things to go back to the way they were just 4 months ago.

Sure, in just a few months everything will go back.  I don’t want to wait though.  I believe I’ve mentioned before that patience has never really been one of my strongest virtues.

No news is not always good news

I’ve always been a believer that in the medical profession that no news is good news.  After all, good news is boring.  Bad news travels quickly because it give the doctors something exciting to work on.  Maybe that sounds morbid, but ask any medical professional and they will tell you it’s the truth.

Today I sit by my phone waiting for some answers that aren’t coming.  I don’t believe that it’s because at the Tumor Board yesterday they decided that my case was boring.  I think it’s because I’m already scheduled to meet the surgeon on Friday and they just don’t want to talk to me over the phone.

It’s 12:15 right now.  I’m giving them until 1:00 to call me.  Jeeze!  At least tell me when I’m scheduled for surgery.  After all, should I accept a gig for next week or should I pass?  Help me out here!

Rats!!!

I was anxiously waiting for a phone call from the hospital to give me some indication of the results of the tumor board.  Apparently there is something else we didn’t take into consideration…  the board doesn’t meet until 4:00pm this afternoon.

Ugh!  You know patience is really not one of my strongest qualities.  I don’t operate under the premise that no news is good news.  I would much rather know everything right now!!!  It doesn’t, however, sound like I’m going to.  Even if I hold my breath!

This may change the way you look at the NBA

I just ran across this article on Yahoo.  It really is both a horrific and beautiful story at the same time.

Players chip in to save coach’s life after Clippers decline medical coverage

By Kelly Dwyer

Seven years ago, former Los Angeles Clippers head coach Kim Hughes was diagnosed with prostate cancer, and the ensuing aftermath will change the way you feel about several NBA types significantly.

Up until Tuesday afternoon, the only functional knowledge I had of former Los Angeles Clippers head coach Kim Hughes was that he was, in fact, a former Los Angeles Clippers head coach, and that he once touched his elbows on the rim in a lay-up line at a high school tournament in Illinois, which really impressed my father.

Beyond that, nothing. Until Tuesday afternoon, when Howard Beck brought this column to Trey Kerby’s attention, and he brought it to our attention. And now we’re passing the feel-good savings on to you, in the form of an anecdote that reveals that NBA players Corey Maggette(notes), Marko Jaric(notes), Chris Kaman(notes) and Elton Brand(notes) all chipped in to pay for expensive life-saving surgery for Hughes, after the Clippers organization (read: Donald Sterling, noted worst person in the world) declined to cover the costs.

Declined to cover the cost of a surgery that would save their employee’s life. While playing rent-free in an often sold-out arena in America’s second-biggest television market. Unyieldingly evil.

Gary Woelfel has the original story:

“Those guys saved my life,” Hughes said. “They paid the whole medical bill. It was like $70,000 or more. It wasn’t cheap.

“It showed you what classy people they are. They didn’t want me talking about it; they didn’t want the recognition because they simply felt it was the right thing to do.”

Hughes said he will be forever grateful to Brand, Jaric, Kaman and Maggette. In fact, Hughes said every time he runs into any of them, he thanks them from the bottom of his heart.

Maggette said that was indeed the case, laughing how he has repeatedly told Hughes over the years it wasn’t necessary.

“Kim thanks me every time he sees me; he does that every single time,” Maggette said smiling. “I’ve said to him, ‘Kim, come on. You don’t have to do that. You’re good.’

No, you’re good, Corey Maggette. You’re pretty fantastically good. And so are you, Marko Jaric, Elton Brand, and Chris Kaman.

And Donald Sterling? You remain a terrible, terrible person.

Here we go!

Today is the day that things start happening.

This morning we’re going to the VA Clinic here in Corpus Christi for some simple tests.  First stop is for a chest x-ray.  Following that it’s time for an EKG.  Lastly we’re off to the lab for a bunch of blood tests.  Once all of that is done, the real fun begins.

Tomorrow morning I have a colonoscopy scheduled at an out-patient surgical clinic in Victoria.  That means that when we get back from the VA this morning it’s time to start prepping for tomorrow morning!  I’ve had colonoscopies before.  They’re really not that bad.  The part that I don’t like is preparing for the test the day before.  If you’ve had one before, you know what I’m talking about.  If you’ve never had this procedure done, then just trust me.

Wednesday I have an appointment to visit with my new Primary Care Physician.  That’s kind of neat, since I’ve never met him before and he’s the one ordering all this stuff for me.  It’s funny, I know this isn’t everyone’s experience, but in the 8 years I’ve been involved with the VA I am beginning with my 3rd PCP. After this appointment, I’m done for the week.

Tuesday (3/22) the pancreatic tumor board meets at UTSA.  There, my case will be presented to the entire board who will discuss treatment options.  Following that, Lisa and I will be making trips to San Antonio for appointments with the Surgeon and Oncologists.  That’s when we really start in earnest.

 

Before I go any further, let me say that I am not now, nor have I been from the beginning, afraid for my own mortality.  I know that this is a major thing, but in the long run, this is just going to be a speed bump in my life.

I am scared for the changes this is going to make in my life.  Perhaps because I really don’t know what they are yet.  I don’t really know if these changes are going to last for a couple of months, or years, or forever.  I’ve never been one to be resistant to change, but I have to admit, I’m not thrilled about it right now.

It’s not the Chemo or radiation that concerns me.  It’s the surgery.  Sure, I’ve had some minor surgery in the past.  (That reminds me of the old joke; “Do you know what minor surgery is? It’s what other people have!”)  This one, however is not minor surgery.  I don’t care who’s having it.

My good friend Dr. Mobley keeps telling me that they probably won’t have to do a complete “Whipple Procedure.”  He thinks that this tumor is small and contained well enough that they actual surgery they’re going to do will not be much worse than having your gall bladder removed.  I’m a little less confident.

I have a feeling that the doctors will have me open and decide to do a complete Whipple just in case there is a little more involvement they can’t see.  If you don’t know what a Whipple Procedure is, let me just say, this is a 4 – 6 hour surgery in which you don’t leave with all of the parts intact that you came in with.

Sure, having the procedure it certainly better than not having the procedure.  That doesn’t change the fact that it’s going to require a long recovery which is going to completely disrupt my life and my family’s life.

I know, I know.  I’ve been through things that have really sucked in the past.  I worked for Palm Harbor Homes for God’s sake!  This will pass.  Some day I’ll be able to look back at this and say; “Geeze, I’d never want to do that again!”  Even knowing that, doesn’t really quell the fears of the unknown that we’re going into.

Don’t worry about me.  I’ll be fine.  These are all things that I was thinking about yesterday during church.  I really love my life right now.  I’m doing the things I have wanted to do my entire life.  I guess I’m a little afraid of loosing any of it.

 

My letter to Senator John Cornyn (First Draft)

Dear Senator Cornyn,

I’m writing to you today to ask your help with the Veteran’s Administration Healthcare System. My wife and I are both unemployed, which means that we have no health insurance. Fortunately though, because I spent 10 years in the Navy I am able to receive healthcare from the VA.

My problem is this: although I’ve had no real complaints to the care I’ve received from the VA, they are moving much too slowly. The very best care available (anywhere) is only about 3 hours from my home. I would like your help in obtaining the VA’s permission to go to MD Anderson.

Here is a time line of what has happened so far:

In about Mid December I started having flu-like symptoms. A couple of days in bed and plenty of fluids and I thought I’d start feeling better. After about a week (this was over Christmas) I still wasn’t feeling any better. Fortunately one of the members of my congregation (I am the Music Director for the First United Methodist Church in Portland) is a physician and has always told me that he would see me at no charge.

On December 30th, 2010 I went to see my friend, Dr. James Mobley (Brigadier General – Retired) who told me after I explained my symptoms that it sounded like Hepatitis. We ran several blood tests and by January 3rd. 2011 we were able to completely rule out Hepatitis. Dr. Mobley said that we really needed to have an Ultra Sound done to see exactly what’s going on in there. I explained to him that without health insurance, there was no way that I could afford an ultra sound; especially after just paying a couple hundred dollars in blood tests.

The good news is that I had an appointment scheduled with my Primary Physician at the VA Outpatient Clinic in Corpus Christi in just a couple of weeks. I would ask him to have the Ultra Sound performed. During the time that I was waiting for my appointment my symptoms would come and go. It really became more bothersome than a concern.

On January 18th I went to the VA Clinic and had several blood tests. Finally on January 25th I got in to see my Physician (Dr. Rangarao Chilukuri). I brought copies of my blood tests from Dr. Mobley with me to the appointment. Dr. Chilukuri seemed very concerned and told me that it was imperative that I get a CAT Scan as soon as possible. I told him that Dr. Mobley suggested an Ultra Sound. Dr. Chilukuri said that the Ultra Sound would show us that there was a problem. The CAT Scan would show us what the problem was.

Two weeks later I was given an appointment (In Harlingen) for a CAT Scan. I called the Corpus Christi Outpatient clinic and told them that Dr. Chilukuri told me that this had to be done quickly. I was told, “Mr. Klemm, you have an appointment already for February 7th (at 9:00am).” On February 7th, my wife and I left our home at 5:30am in order to make my appointment. The facility was very nice and the staff was wonderful! The entire trip, although very early, was completely uneventful.

The very next morning I received a phone call at about 9:00am from a Dr. that I’ve never even heard of. I was teaching a class at the time and unable to answer my phone. The message that was left was this: “Mr. Klemm, this is Dr. Hickson of the Corpus Christi VA Outpatient Clinic. It is very important that you get in touch with me so that we can discuss the results of your Cat Scan yesterday!” When class was over (about 30 minutes later) I called Dr. Hickson. After being left on hold for 20 minutes I was told that he was with patients, but would call me right back.

It just so happened that I was scheduled to got to the VA that morning for some more blood tests. By the time the blood tests we done it was almost Noon, and I still hadn’t heard from Dr. Hickson. Since I was in the building anyway, I went to the front desk and asked to see him. Within just a few minutes the clerk told me that Dr. Hickson really didn’t need to see me, but he was on the phone and I could talk to him.

Dr. Hickson told me that the Radiologist from Harlingen called him to say that there was a mass in my Common Bile Duct. It was most likely a Gall Stone that had become lodged and that was what was causing all of my symptoms. Dr. Hickson went on to tell me that The VA was going to authorize me to go to any doctor I wanted to have this stone removed. Feeling very relived, I asked the clerk for a copy of the letter with my authorization. I was told that the procedure wasn’t actually approved yet, but as soon as it was, they would let me know.

On February 11th, I was given word that my procedure was approved. I had seen a Gastroenterologist in Corpus Christi several years earlier, so I called his office to make an appointment. As soon as I mentioned that the VA was paying for the procedure I was told that the doctor would not see me. Knowing I had an appointment scheduled for February 14th, I figured I’d wait until then and get Dr. Chilukuri’s help in obtaining an appointment.

When I saw Dr. Chilukuri on the 14th, he was distressed that I had not yet obtained an appointment with a Gastroenterologist. He gave me a couple of names to try in Corpus Christi and suggested that perhaps I’d have better luck in San Antonio. He also went on to tell me that there is a chance that this wasn’t a stone. It could be a tumor, but we won’t know for sure until someone actually lays eyes on it. That’s why it’s imperative that I get this procedure done.

That afternoon my wife and I called every single Gastroenterologist in Corpus Christi. Each and every one of them told us that they would not see us if the VA was paying the bill. In desperation my wife started calling Victoria. We finally found a Doctor that was willing to see me. As it turns out, he was also a 10 year Veteran of the Military and felt bad for me. Unfortunately he was going out of town and wouldn’t be able to see me until February 22nd.

I called several more doctors in Victoria and some in San Antonio. February 22nd was still the earliest I could get in to see anyone. I can’t say enough about Dr. Carlos Chinea. He examined me and immediately scheduled me to have the stone removed the very next day. I really liked Dr. Chinea and would very highly recommend him to anyone!

The next morning (Feb 23rd) we drove to Detar Hospital in Victoria. Again, this is a wonderful facility! Dr. Chinea performed an ERCP on me. I’m not sure exactly what that stands for, but essentially they go down through my mouth, into the stomach and then up the Common Bile Duct to remove the obstruction.

After the procedure, Dr. Chinea called my wife in to explain the results to us. First and foremost he told us that there was no stone. There is a mass growing in the area that was constricting the Bile Duct and that was what was causing the symptoms. To relieve some of the discomfort he inserted a stint to bypass the bile duct and drain the Gall Bladder directly into the Small Intestine. He went on to tell us that he took some biopsies of the mass and we should know very soon what it is. In his opinion though, it looked like early stage cancer.

The afternoon of my procedure I called Dr. Chilukuri to give him an update on what Dr. Chinea told us. He told me that he wasn’t surprised and that the moment I received my biopsy results I should bring them to him immediately. He also told me that Friday was going to be his last day at Corpus Christi, he was being transferred to another facility.

It wasn’t until Monday morning that I received a call from Dr. Chinea confirming that this is cancer. The good news is that neither the Liver or the Pancreas were involved. Dr. Chinea went on to tell me that more than likely I would need a surgery called a “Whipple Procedure.”

Once I got off the phone with Dr. Chinea I immediately called the VA. I told them exactly what I was told and that I needed to see a doctor as soon as possible. I was told someone would call me right back. By Tuesday March 1st I still hadn’t heard anything, so I called the VA again. I left the exact same message and this time I was called back within about an hour.

I spoke to “Nurse Susan,” who is Dr. Ortiz-Garcia’s nurse. Apparently Dr. Ortiz-Garcia is my new primary physician. She told me that she would call to get all of the reports from Dr. Chinea. I told her that I just happened to have all of the reports in my hands and could have them faxed to her within 5 minutes. About an hour after I faxed everything, I got a call from Nurse Susan who told me that she had received the reports and would be passing them on to Dr. Ortiz-Garcia.

This morning (March 2nd) I got a phone call from Nurse Susan who told me that Dr. Ortiz-Garcia had reviewed everything and wanted to see me in a couple of weeks. I immediately asked Nurse Susan why we were waiting so long. She assured me that Dr. Ortiz-Garcia was setting up consults with surgeons and oncologists. That’s where we stand right now.

Here are my biggest concerns. First off, the type of cancer I have is “Signet Ring Cell Adenacarcenoma” which is a particularly aggressive form of cancer. The fact that I have this in my Ampulla in Vater is very rare, especially for someone my age. I am 44 years old and normally this attacks someone in their late 60’s early 70’s.

I am uncomfortable waiting weeks for a plan to be developed. I would be a lot more comfortable if I felt some sense of urgency. Maybe even more importantly I’m concerned about the surgery. According to the American Cancer Societies website this is a particularly difficult surgery. During a “Whipple Procedure” parts of the pancreas, liver, stomach and small intestine are all removed. They further recommend that you not have this procedure in a facility that does fewer than 20 of them each year.

I would very much like to go to MD Anderson. I do appreciate all of the help I’ve received from the VA, but frankly believe that at this point they are in over their heads. Since the VA wasn’t able to perform an ERCP themselves, I can not imagine that they’ll be able to perform a Whipple Procedure and certainly not in a timely manner. I would be much more comfortable receiving my treatment at MD Anderson and would appreciate any help you can give me in gaining authorization for this.

Thank you in advance for your help,

Sincerely,

Paul Klemm

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