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Posts tagged ‘University of Texas MD Anderson Cancer Center’

3 Times a Charm

I have been struggling the last week or so with the notion that we are heading back into battle. The “Summer of Love and Fishing” is over with the return of our son Daniel from time spent with his father. It went pretty fast and the move ate up a lot of our time and energy but it was still a fun time spent together. We certainly haven’t stopped the Love and Fishing with us taking kayak excursions at least once a week if not more. We have enjoyed these things more than I can say. It lifts my heavy heart to see Paul enjoying the outdoors and communing with nature. I would enjoy it more if he actually caught some fish but hey, that seems to be MY job! lol! And what a good sport he is when I smoke him! I know he likes to hear me squeal every time I bring one in!

But these last several days I really fell into a funk. It seems when I get really scared I just clam up. I hardly speak and that is so not “me”. It’s almost like a rabbit hoping if it’s quiet enough the scary thing will just go away…but in our case it’s not. Even with all the challenges these last 10 weeks Paul has enjoyed a renewed energy and good health. He has been eating well, maintaining his fabulous 200 lb. frame and his color is amazing. He looks so healthy! But the fears of what has been going on with no treatments the last 10 weeks terrify me….us…..

He had his baseline PET scan yesterday. We are bracing ourselves for the worst. My biggest fear of course is they are going to say the disease progression is too far gone……but I have serious doubts that’s realistic. If it were at that point he would feel like crap right? He certainly wouldn’t look or feel as good as he does. He keeps telling me “you know, the results ARE going to say it’s spread. But the NEXT PET scan, after I receive some of this treatment,  will show improvement.” Forever the fighter…..

So after a few anxiety attacks, lots of thought, tears and prayer I managed to pull myself out of it. The thing that really did it for me was walking into my church. We are very involved with our church and just love it. Our church families have been such an incredible support to us. The choir takes the month of July off and I usually miss a few church services during that month. I spent a few Sundays working on the new house, unpacking and arranging things. That really didn’t help me emotionally though. I got so caught up in “other stuff” I really suffered. When Daniel came back we attended as a family last Sunday and it felt so good to be back. We have a little Children’s part during the service where Amy, our Youth Ministry Director, sits up front with the kids and does a little bible lesson. She talked about how sometimes we get busy over the summer and miss church and that’s ok but keeping your relationship with God alive is sort of like riding a bike. You may fall off but you pick yourself back up and start again and just keep on pedaling! I am always so amazed to go to church and hear a message that seems to be custom-made for ME.

So when Paul asked me if I wanted to sing the solo he had picked out for me this week and to sing a duet at our fundraiser on Sunday I was all…..Meh  :/  ……….I was pretty deep in my hole, not even wanting to emerge to do something I enjoy so much like singing……and he said he would handle it if I wasn’t up for it but I said no and that we would practice with Kay and Courtney on Wednesday night. Something about walking back into that choir room and working on these 2 beautiful songs did it for me. My spirit was renewed and I left that night much more back to normal that I thought I could possibly be at this point. Music can be such a healing medium.

I am slowly getting built up again for Mondays start of round 3 of treatment. For those that don’t know, Paul will be starting an “off label” study. It includes 3 chemo drugs. It is FDA approved for breast cancer and lung cancer and has shown to be about 33% effective in trials for people with pancreatic cancer. That 33% went into partial or complete remission. The rest of the patients in the trial also showed some improvements (slowing of growth, etc). Those stats may not seem good but with this type of cancer they are GREAT! Paul has done a lot of research on clinical trials and he is very pumped for this one as are his doctors. The VA has approved this treatment and also said they have available clinical trials at Audie Murphy hospital in San Antonio in the event we are not satisfied with the results of this one. As we have said from the beginning, we just want OPTIONS and after many weeks of scrapping and fighting we have them.

I just have to keep giving this to God and trusting that he is going to lead us to the place we need to be. It’s so easy to misinterpret His path. I thought for SURE MD Anderson was the way to go but it just wasn’t. So I just need to trust that this is where we are supposed to be. With all the calls I made and that were made on our behalf, all the pushing and shoving and begging and pleading, screaming and shouting to political figures….it just didn’t happen. I will forever be disappointed and shocked at how all that went down. How the best cancer research hospital in the country wouldn’t help us at all….no recommendation….no assistance financially…..no nothing.

But I just have to trust this is the way it’s supposed to be. That this off label treatment, the 3rd time, will be the charm. We are as ready as we will even be and with so many people standing behind us in prayer, with good thoughts and positive energy we know we can make it.

Peace,

Lisa

 

Want to write your Congressman on Paul’s behalf? HERE’S HOW!

FROM OUR VERY GOOD FRIEND RALPH GOONAN! WANT TO WRITE A LETTER ON PAULS BEHALF? HERE’S HOW!!

I sent this letter yesterday to Blake Farenthold and forwarded it to several friends in my network for them to send to their own representatives. In case you need a pre-written letter to pass on to your friends, feel free to use this one. Let them know they can look up the contact info for their own representatives at http://www.house.gov/representatives/find/ ——–

July 17, 2012 The Honorable Blake Farenthold

2110 Rayburn House Office Building

United States House of Representatives

Washington, DC 20515

Dear Representative Farenthold,

I understand that members of Congress rarely receive constituent letters that express anything other than a complaint. I wish this letter were different. Please know that I certainly sympathize with how you must constantly listen to gripes and complaints from the citizens you represent. I thank you for your time and attention.

My good friend Paul Klemm of Portland, Texas, is a 10-year Navy veteran. His time of service included operations Desert Shield and Desert Storm. He served his country with honor and distinction. A native of Ohio, his Navy service took him around the world and ended with an assignment to Naval Station Ingleside. He remained in the area after his service, working as a financial expert, real estate agent, and as an amateur and semi-professional musician.

In 2011 he was diagnosed with ampullary cancer, a rare form of cancer whose victims are usually in their 70s (Paul is in his mid-40s). With the economic downturn forcing him out of the real estate business, his insurance with Veterans Affairs was his only coverage. The VA covered his initial treatments and surgeries, but eventually all treatment regimens approved by the Food and Drug Administration were exhausted with no improvement. Clinical trials are now his only hope for survival.

MD Anderson Cancer Center in Houston is willing to consult with Mr. Klemm and likely take him on as a patient. However, the VA is refusing to cover non-FDA-approved treatments. MD Anderson is now requiring Mr. Klemm to pay for any consultation and ensuing treatments up front, out of his own pocket. According to his most recent correspondence with MD Anderson, the consultation alone would cost over $14,000. The treatment cost will likely dwarf that amount.

It is appalling that a veteran like Mr. Klemm who served with such distinction would be denied VA coverage for treatments that may very well save his life. On the medical front, there is still hope. There may be several clinical trials being conducted at MD Anderson that could prove successful. Money seems to be the only barrier to finding out for sure. And it appears it’s not even an issue of money — rather, it’s an arbitrary rule that prevents the VA from covering the cost of treatment plans that have not been approved by the FDA. This is a rule put in place by Congressional decree. And if Congress has put this rule in place, it can remove it — or at least provide a way to prevent such rules from needlessly obstructing access to life-saving treatments.

Please take notice of Paul Klemm’s predicament. He maintains a blog detailing his experiences. One entry in particular sums up his current situation nicely. He has also made a YouTube video detailing his difficulties. The links are: Blog entry: https://littledogdiaries.wordpress.com/2012/07/12/what-now/ YouTube video: https://www.youtube.com/watch?v=vEfwlea7TAk&feature=player_embedded

No doubt you are aware that the VA has had difficulties providing the coverage and care that our honored veterans have earned for serving the United States. This is one case where bureaucratic difficulties can mean the difference between life and death.

Thank you for your service in Congress, and thank you for your time and attention in this matter.

Sincerely,

  • www.house.gov

    Not sure of your congressional district or who your member is? This service will assist you by matching your ZIP code to your congressional district, with links to your member’s website and contact page

Meh :/

Underwhelmed…that pretty much describes our trip to see the research oncologist at CTRC (Cancer Therapy and Research Center) in San Antonio. We met with Dr. Lu last year after Paul had his Whipple procedure. We actually started his first go round of chemo with CTRC but moved it to the Corpus Christi Cancer Center when it was determined both facilities would do the identical treatment. It just wasn’t worth the drive 2.5 hours each way when we could do the same thing at home.

So we caught Dr.Lu up on all the treatments and surgeries Paul has had to date and answered all his questions. We also provided him the slides and reports from his baseline PET scan and the one he had on May 25th. Dr. Lu took all that info to the study coordinator. After about a 10-15 minute wait he returned with 2 packets in his hand. Apparently there were only 2 Phase 1 studies he would be eligible for and we should take them home and read them and decide if we wanted to participate. He recommended one over the other but he really didn’t “sell” either of them to us. It was sort of like “meh…we can try one of these….I guess…” so we weren’t exactly left with the warm and fuzzies. He encouraged us to investigate other hospitals and even recommended another research facility right down the street. He also said it would be a good idea to contact MD Anderson and other large cancer hospitals and they may have other clinical trials we would like to try.

The first clinical trial, the one he recommended, was the testing of a drug that is currently being used to treat patients with prostate cancer. After reading the details of the study it appears they are simply looking for people with incurable cancer to submit to testing to see how much medication they can tolerate. There was nothing about the possibility of this drug improving his chances of survival. So yea, no thanks.

The second trial was a little more interesting in that there was a possibility it could shrink tumors and increase life span. That drug required 21 days of administration and 7 days off. Total test time was 6 mos. Paul and I are totally prepared for the possibility of his having to relocate during a clinical trial but this one just didn’t blow our skirt up so we are going to continue looking.

Maybe it’s unrealistic to expect someone to be happy to see us as a potential clinical trial subject. We were hoping someone would say “Oh yea! This one is perfect for you!” or “This one is going to be your best shot”…..something other than “lets throw this against the wall and see if it sticks”….that just didn’t inspire confidence.  So again, the search continues.

After our appointment we got to meet with financial advisers. That wasn’t fun. Very nice ladies  but it became very clear our lack of insurance was going to be a problem. In their experience the VA won’t cover this and sadly, my insurance won’t either since Paul falls under “pre-existing condition”. Some of it, like the actual experimental drugs are usually covered by the drug company but other things, like pre-trial testing (blood work, PET or CT scans, office visits, etc) will NOT be covered…..and they are incredibly expensive. I assured them I know how to make noise with the VA and they also gave us a few resources on how to obtain insurance for the uninsurable. As of right now we are considered a “self pay”. I am considering asking if they will accept one of my kidneys in exchange…..probably not…..

So that’s pretty much the scoop. We are exhausted and are looking forward to a good nights sleep so we can start again tomorrow. We continue to pray God will lead us to where we need to go to find Paul a cure.

–L

Clawing Through Bureaucratic Bullshit

So we are starting out our day with some positive news….got a call from the lovely Nurse Susan early this morning to say the VA has approved care from an Oncologist and a Surgeon and the vouchers are in the mail. She also arranged for us to pick up a copy that sits at the front desk and she gave me a separate number so I can contact her directly.  I thanked her profusely and said that we hadn’t been informed at all of what was going on.

MD Anderson called US (!YAY!) shortly after and gave us a list of things we need to provide to them. They also want to talk to someone at the VA about billing. …….

Back to the VA we go….Paul is essentially telling Nurse Susan exactly what we need, who need to talk to whom…..of course, everyone is resistant since we are now getting into the vat of Bureaucratic Bullshit. Our Real Estate Friends and Paul’s Military Buds will understand….the Bureaucratic Bullshit is where people are so constricted by rules and regulations and paperwork and protocol that the simplest of tasks cannot be accomplished. We are fighting people to pick up a God damned phone and make a call. We have entered into a world of insanity…..incompetency…..and Bureaucratic Bullshit. It’s the ridiculousness of my having to pick up a phone, dial it, then hand it to someone before they can take the call…..seriously….it’s THAT INSANE! And we have no time and certainly no patience for pinheads.

Fortunately, this isn’t our first trip to this Rodeo. Having spent many years as local Realtors, we are experienced with persuading people to do what we want..lenders….appraisers….title folks and such…….. but don’t worry! Paul and I strictly use our powers for GOOD not EVIL 😉  All of those days I worked and worked trying to get my deals through has prepared me for this fight.  The tenacity we acquired from a lifetime in commission sales will ensure every T will be crossed and every I will be dotted. And we will fight to get the best…..

So where it stands Paul is heading to the VA now to get his approval letters and we are waiting for a call from the head financial guy at the VA Hospital in San Antonio (Audie Murphy). We may still be in a fight to go to MD Anderson Paul says. But we are prepared to pull out some big guns. We have our letter to Senator Cornyn at the ready and a connection at Channel 6. We can send press releases to all the local news stations and papers if necessary. I know I can obtain letters from both Dr. Mobley and Dr. Chinea stating Paul should go to MDA. I even have a great friend who works in PR I could probably call to speak as our family representative!! All “at the ready”!

….We are so incredibly Blessed!……and ready to rain a media shitstorm on their ass!…..I better color my hair!

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