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Archive for June, 2012

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

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A New Beginning!

This is the day.  In about an hour Lisa and I are heading to San Antonio.  There we are going to meet with a Gastro Oncologist, Dr. Lu, at the Cancer Therapy and Research Center.  We’re going to talk about treatments that might be available for me.

It’s been such a long week and a half.  It’s hard to believe that it was just last Monday that my local oncologist told me that there was nothing else he could do.  It’s not been without roadblocks either.  Just this Monday I was told that the VA won’t pay for any experimental drugs.  In other words, if it’s not FDA approved and being used for it’s intended purpose, they won’t pay.

Fortunately the doctors at CTRC also have privileged at Audie Murphy VA Hospital in San Antonio.  For those of you not familiar, Audie Murphy is a gigantic VA hospital in San Antonio.  Since the CTRC Doctors are so much closer to the people actually writing the checks, we’re hoping that will make a difference when it comes to clinical trials.

We had been holding out hope that Lisa’s insurance would kick in a little early and I would just be able to use it.  After a little checking from Lisa this week, we found out that isn’t going to be an option.  Her insurance says that they will not cover me, because of pre-existing condition until after a one year waiting period.

So there you are.  We have very few options at the moment.  The truth is though, until we meet with a research oncologist (i.e. Dr. Lu), we don’t even know if there is a treatment available for me.  So we’re going to have to take this one step at a time.  That’s why today is a new beginning.  

After we find out what my treatment options are, then we’re going to worry about how it’s getting paid.  Worst comes to worst, I’ve already got my press release ready.  I have no problem going to the media to tell them that the VA is willing to let a healthy, 45 year old father of 2 and Desert Storm Veteran die, because they won’t pay for my treatment.

Honestly I do hope it doesn’t come to that.  I would much rather just sail right through all this.  Give me a treatment that works.  Make me better.  Let me move on with my life.  I’m really getting bored with this whole cancer thing!!

8 Years of Wedded Bliss!

 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 ❤

–L

Roadblocks SUCK!

I knew it just seemed toooo easy……I called MD Anderson today and they made out like all I needed was a Referral and Authorization from the VA for Paul to get treatment…..I thought, “well, that was easy..” I have done that several times in the last year and a half….getting “vouchers” for his treatment….it’s a pain in the butt but not impossible to get….

however…..

I returned home to find that the VA contacted Paul and informed him they don’t cover “Experimental, non-FDA approved” treatment.

That was certainly something we didn’t expect. And the news hit him pretty hard…..

Again, we have exhausted the typical FDA approved protocol for his type of cancer.

Now I was a little taken back at the news….shed some tears….but it didn’t last long. I started sorting things out in my mind….

#1- fact is, the VA hasn’t wanted much to do with this from day 1 and it’s been  nothing but push and shove with them anyway….what’s ONE MORE THING?!? Seriously…this is me we are talking about here. If anyone knows how to make a stink in the VA system it’s me. Having spent our entire careers in sales we don’t accept “NO” very easily. We are beyond tenacious.  They didn’t call me “The Bulldog” for nothing….cause I just  won’t let go…..and I sure won’t let go here.

#2- We still have my insurance kicking in in about 6 weeks. The gal at the VA did tell Paul even if the VA DOES decide to cover it (and this gal made it very clear she would fight for us!) it would still take some time to get it approved. Because this request really has to go far up the chain of command. In the meantime, we are getting closer and closer to my insurance becoming valid….of course, I don’t know if MINE would cover it either. And that’s something I am going to check out tomorrow.

#3- There HAS to be some sort of drug company sponsored  grants available to pay expenses for patients willing to submit to drug trials. You can’t tell me we are the first POOR PEOPLE who have walked in the door saying “Please help us”. There has to be grants and funds available, ESPECIALLY for a young, otherwise healthy, willing to do ANYTHING ampullary cancer patient. He is a rare bird walking into the Research Center and I am confident someone is going to want to sign him up.

#4- if all else fails I will be standing in front of anyone who will put a microphone in my face so I can tell them the story on how the VA is going to allow a 45-year-old father of 2 die because of bullshit VA red tape. No one wants to see that, especially in an election year. I can make a LOT of noise people….we will not go away quietly. I don’t relish the idea but we will do what we have to do. And we know people who know people and we could quickly make this a potential national news story.

So what can you do? Right now, just PRAY. Pray for our strength and guidance while we navigate these stormy seas. Pray that God will intervene and show us the path we are supposed to take. Pray that the right people are put in our path so we may have assistance getting him to the people who are going to save his life. Pray that we remain strong in our faith. If you aren’t a praying person we ask for your good thoughts and well wishes. This is going to be a tough fight, made even tougher but with our God and our family and friends behind us we will persevere!!

–L

The Pity Party is Over!

Last week was a really tough week.  The fact is that my oncologist said that left untreated I only have 8 – 10 months.  Since we have exhausted all of the FDA approved treatments there is nothing else, at this point that he can do.  It’s time for us to go to a Large Research Cancer. 

When we were talking to Dr. Mahmood we all agreed that since M.D. Anderson will not accept VA Insurance, we needed to find another facility.  When I first started this journey I started at The Cancer Therapy and Research Center (CTRC) in San Antonio. 

Now, don’t get me wrong, CTRC is a very good facility.  It’s ranked in the top 3 Cancer Facilities in Texas.  I should feel perfectly comfortable going there.  Except for one thing…  M.D. Anderson is only up the road in Houston and it’s ranked in the top 3 cancer facilities in the world. 

I believe that there is a chance that CTRC will be able to provide all the care I’ll ever need.  But if for some reason they can’t, or the treatment the recommend doesn’t work, I don’t want to wish that I had gone to the very best facility. 

Late last week I applied for an appointment with M.D. Anderson on their website.  In my request I laid out (Briefly) my entire history.  More importantly I made an impassioned plea that I am a 10 year Desert Storm and without their care, my chance of survival is negligible. 

I completely understand, even if I don’t agree, why they will not accept VA Insurance.  The VA has, in the past, been terrible about paying their bills.  Hell, I have a stack of threatening letters on my desk from different medical facilities.  They will get paid, so I’m too concerned.  Here’s the deal though…  The VA has been under fire from congress for their claims processing.  The result is that they are paying their bills much faster today then they have in decades. 

On top of that, Lisa’s new job will come with insurance.  She’s about 45 days away from getting her coverage.  Now, there is no way I can wait for that long without treatment.  The good news is though, that M.D. Anderson’s financial liability will be limited because at that point I would be covered by the new insurance.

Nest week, if I don’t get a call from M.D. Anderson I will start off by calling them.  We’ve got some cards up our sleeves though.  First off, Lisa’s new boss has a Sister-in-Law that is on the Board of Directors for M.D. Anderson.  Secondly, more than one of my friends that are physicians have agreed to call and make a plea for me to be accepted.  Lastly, if none of that works, I’m going to the media.

Let’s face it, what news outlet wouldn’t want to run a story about a Desert Storm Veteran with a rare form of cancer being turned down by a large medical facility because they don’t want to accept payment from the Federal Government?  I laughed about this the other day when I remembered Stacy Brown offer a contest among her friends to see who could get onto Fox News first without breaking the law.  I don’t remember what the prize was, but I feel confident that if I had to go to the media, I can win that contest.

Once again, I want to thank all of you.  I especially want to thank Virginia Hammond for the advice you’ve given me recently.  Thanks Jackie Jaskula for all of your love, support and advice.  There are so many more of you that I can’t name all of you individually.  I appreciate each and every one of you!

What if…

Could there be a more useless question?   I get on my family all the time about this.  I tell them, “You can what if this to death, it’s not going to change the outcome.  Relax!”  It’s one of my pet peeves.  Despite that, I find myself what if-ing this week. 

I have been researching Clinical Trials that relate to my cancer.  Frankly I’m having trouble finding one that I fit into.  That doesn’t mean it’s not out there, I may not have understood all of the medical terminology.  I am, after all, only an arm chair physician.  I have also only looked at a few of the Major Cancer Centers.  So far I’ve checked CTRC (San Antonio), M.D. Anderson (Houston) and Dana Farber (Boston).  I know there is a really good center in Chicago I should check out.  I believe Ohio State has a really good facility, as does UCLA. 

While I’m checking I keep hearing all these “What if’s.”  What if…   There are no clinical studies for me.  What if…  I get into a clinical study and it’s no more effective than anything else has been?  I know what the answer is to those questions.  The answer is grim.

Don’t get me wrong.  I have not lost my positive outlook.  i really and truly believe that I am a clinical oncologists dream.  I am willing to submit to anything.  I’m young (about 30 years younger than the average patient with this type of cancer), I’m strong and I’m healthy (aside from this cancer thing).

There has to be something out there!  I am not ready to give up!  I love my life!  I have WAAAAAY too much to live for.  My family, my friends, not to mention I still have people that count on me even beyond that group.  Frankly I just have too much to do to be bothered by all this.  I’m bored with this and ready to move on!

Yet…  I keep hearing, “What if…”  I’ve had a prescription for Valium for about a year now.  Rarely do I ever take one.  Jeeze I bet before this week I hadn’t taken a Valium in 6 months.  This week alone I know I’ve taken 2 or 3 a day. 

Thank God for my family, my friends, my job, my faith, for everything I have that’s good.  I’m not sure how I’d make it through this otherwise.

It was the best of times…..it was the worst of times……

Often times when I speak of our courtship I often say this quote. Carrying on a long distance romance for 10 months is an unusual thing for most couples. When Paul contacted me through Classmates.com after so many years my heart was just a flutter. We spent 2 days on the phone and I knew….I really KNEW that this was something incredible. I flew down to see him after 30 days and while packing to return home I said “you are going to marry me you know”. That’s how positive I was that this was the perfect time for us.

After that we traveled back and forth every 2 or 3 weeks. We would cram so much love and fun and adventure into a weekend. Seeing him walk town the tarmac, so tall and strong and handsome, it was like something out of a movie. People would stare and smile as we embraced like a year had passed rather than just a few weeks. Of course, those few weeks apart felt like a year. We talked of our past and planned our future together. We went to all our favorite hang outs as kids and  shared our hearts like no others before.

Sundays were the worst. So many tears were shed at the airport….embraces that were never long enough….crying as I went through security….the looks of sympathy from TSA agents. I would cry most of the way home or drive home to lay in bed and breath in his scent on my pillow…crying at the thought of a day without his hugs and kisses…..

it was the best of times….it was the worst of times…….

Now, almost 8 years later, we can look back on those days so fondly, knowing what a blessing they were to us. It was such a special and unique time.  Something not many people get to experience.

This experience with Paul’s illness has almost paralleled our courtship experience…..and it feels so strange to say that. Coming home today I was thinking of how many blessing we have received as a result of this experience. We have been surrounded by family and friends in a safe cocoon of love and support. From hugs and prayers to words of encouragement on Facebook, meals and financial support….it’s been incredible. We have seen and felt God’s love in a way few people experience. How many people go through their entire lives and never feel this? How incredible is that? and it’s all because of this journey ….as horrifying as it is….it’s still filled with blessings.

I spend my days thinking of my love constantly. I miss him every moment and can’t wait to come home so we can hold each other again. As our close friends and family know, we have always been “lovey dovey”. We have grossed out the children more than once with too much PDA for their liking and now it’s ramped up even more. We are connected on a level like no other…..we look in each others eyes and see directly into each others souls…..

Once again…it’s the best of times…it’s the worst of times…..

Truthfully, that’s been the theme of our entire marriage! lol! We have had some wonderful highs….successful business working together….raising 2 wonderful children….building our dream home from scratch….. living our lives surrounded by family, wonderful friends and the most adorable dogs a person could ask for……a closeness to our God gained through faith, trust and service.  We have also experienced some terrible lows as well….the crash of the real estate market meant the end of a business we treasured, struggles raising teenagers, financial disaster, the pending loss of our home and of course cancer…..

But you know,  I wouldn’t trade it for the world. Often you hear the saying, “It’s better to have love and lost than to never have loved at all”. Even though we still have lots of fighting left to do I won’t lie and say I haven’t thought of life without the love of my life….and I can honestly say it IS better to have loved….I wouldn’t opt out of this for anything. The thought of spending my life without ever having experienced a love like this would be much more tragic than losing him to this disease.

It is the best of times…..it’s the worst of times…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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