Archive for the ‘By Lisa’ Category
A group of wonderful, amazing people have organized a benefit on our behalf! These folks have been working tirelessly for weeks collecting an INCREDIBLE assortment of auction items like a guided fishing trip, golf outings, hotel accommodations, jewelry, art and LOTS more! Not only that, there will also be a Musical Review from 3 to 4 featuring some of our most TALENTED friends!! Paul will be playing his sax and he and I will also be singing a duet together!! Admission is FREE so bring your family and friends and grab some of these great auction items and support my wonderful husband in his journey to recovery from this awful disease! Mark your calendars and we hope to see you there!
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.
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
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.
It’s been a few weeks since we posted. Frankly, we are just living in denial at the moment. We have taken this time of “summer with no children” to laze around, go fishing and kayaking, cook and eat amazing meals and enjoy Paul’s good health in all facets. Hearing the news that he has exhausted all FDA approved treatments has definitely effected his mood and spirit. It really showed at work with his sales being pretty dismal. (not that I care about ANY of this mind you……I just don’t want him discouraged or giving up….work will wait in my opinion.) But he is working his way through it and is ready to face July with a renewed sense of purpose and drive. In typical Paul fashion he just had to work it all out internally and now seems to be on the right track.
Of course, a constant source of frustration is dealing with the VA and our attempts to get him into MD Anderson. After waiting 2 weeks to get the VA “voucher” we got it sent off to MDA along with all his medical records from the CC Cancer Center. After waiting another week and a half I finally got to speak to a patient advocate in the gastrointestinal department. She told me that the “voucher” isn’t what they needed and they needed an actual “authorization” instead. *sigh* So now we have to get the VA doc to call MDA so she can give him the “codes” and they can get the “authorization”…..I’m sure that will be easy….NOT……it gets better….after that, MDA will draw up a CONTRACT that they will want the VA to sign guaranteeing payment. She informed me in her 14 years there she has only seen ONE person get it signed and he was from out-of-state. So yea……
After speaking with her some more I informed her of some of our history and that we had already exhausted FDA approved treatment and we are really seeking experimental. I said “I KNOW if the VA won’t pay for REGULAR treatment they sure as hell won’t pay for experimental. My insurance company said Paul will be denied due to pre-existing conditions and even if they DID cover him, they don’t cover experimental treatment either. So how in the world do these people get into clinical trials?” That’s when she put me on hold, contacted someone in that department and came back with some info. She had a packet to send us (I insisted she e-mail it) getting all our financial information. Basically an application for financial assistance. Little did she know Paul has all that info at his fingertips. We had it filled out, signed and faxed all 18 pages back to her the same day (this past Friday). So the plan is for me to start nagging them on Monday. It sounds like we may just bypass the VA altogether.
I know this much, I feel like I am wearing out. Maybe because he looks and feels so good I feel like he isn’t even really sick….that this has all just been some horrible nightmare and everything is fine. Of course, I know that isn’t true. And come Monday I will don the armor once more and go into battle to get him where he needs to be so we can get this over with once and for all.
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.
Today is our 8th wedding anniversary…..celebrating a day that was truly one of the best days of my life. We don’t have a lot of pictures from that day….it was very casual….no professional photographer…..no fancy reception…..in fact, we were married in front of our churches Vacation Bible School prop…a HUGE paper mache volcano! Some of the church ladies offered to cover it with large screens but we said “No way!” and just went with it! I even tailored my flowers to go with the Hawaiian theme.
It was a beautiful ceremony….Paul belonged to the CC Flute Club and they played for the wedding….we were married by one of our favorite people, Pastor Thom…the children played a special role of course with Daniel walking me down the aisle and Rachel as our flower girl…..all 4 of us agreeing to blend our special family and fill it with love for one another….and we shared our love with our very special friends and family at FUMC Rockport. After enjoying cake and punch at the church we went to the church parsonage to enjoy a real Texas style BBQ. It was a wonderful day….but nothing compared to the wonderful 8 years I have been blessed to share with the love of my life.
I know not everyone finds this….frankly, I wasn’t sure I was going to find it…..that one person that is perfect for you. Not saying we haven’t had some stressful moments but our marriage is an anomalie. No fighting, no arguing….sure some disagreements but we always talk it out. We have never gone to bed angry. Honestly, it’s difficult for me to think of any times we HAVE been angry at each other. Crazy I know but true. He is my best pal. The one person I want to spend my time with more than anyone. Going to Disney World or going to the grocery store, he’s my best friend and we have fun no matter where we are. We have giggled at more than one funeral because we always bring out the best in each other. We have gone through this life helping the other up when we stumble, encouraging each other and cheering each other on. We have even kicked each other in the butt when necessary.
Even before we were presented with our biggest challenge ever, cancer, I told him many times I could die tomorrow and he should know he has made my life complete. That I have the BEST of what love and marriage is supposed to be. And of course I feel that way now more than ever. No matter what happens I will never have an ounce of regret. I will cherish these last 8 years and every moment we have from here on out….knowing I will go every step of the way with the one true love of my life ❤