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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

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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…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

More tears…..

More tears today….came out of the blue to be honest. Paul and I were talking about the physical effects his treatment has been having on his body and he says, “not to mention the psychological aspects. I’ll confess, I’m a little worried about Friday” ….Friday? What’s Friday?……his first PET scan. This is where we find out if the new treatment is working.

Paul and I were both surprised when he didn’t have regular scans with his first treatment but his doctor insisted it was ok not to. I’m sure they take everything like his age, health into consideration when making these decisions…..but it did seem strange not to get regular updates on how this was going. Sadly it took a medical complication like a bowel obstruction to show us it wasn’t working.

Anyway, this” before church conversation” of course set the wheels in motion…..almost like pre test jitters……is all this working? Are they even going to really be able to tell from this scan? and of course the one question that weighs the heaviest….what if it isn’t working?

That question alone is enough to send me spinning out of control into this incredibly vivid scene of life without my husband. The awfulness of it is unbearable. And let’s face facts…..it’s a distinct possibility.  Looking at him, standing at the podium at church reading the opening prayer with the congregation…..I am overcome with emotion. Eyes keep welling up and spilling over. It got embarrassing after a while since I sit in front of our entire church in the choir loft. My friend’s hand me tissues but I just can’t seem to get myself under control. Wave after wave of grief, fear, uncertainty…….sigh…..it was a rough service. But I made it through, gathering myself together when Paul went up to sing a jazzy little number about Jesus being the rock in the storm……

But even after a nice lunch with Paul and Daniel and my traditional retreat to the bedroom for my Sunday nap….I still can’t shake it. A little more crying then finally…sleep…..where I wake up with a little more perspective on things. I look around my home, noticeably empty after a successful pre-moving yard sale, and there is no time for tears. There is much to do and time is running short to do them. Packing, organizing children before they leave for summer adventures, more packing, more selling of unnecessary things, home hunting and of course, cancer fighting……always fighting……

 

Thunderstorm Thoughts

We were able to get our son Daniel a Nook for his 14th birthday. He is an avid reader, so much so we have caught him reading under the bed covers on several occasions. How do you punish a kid for that??!!?? Paul was a voracious reader as a youth so it’s nice to see them share that love of reading together ❤ The kids have really made a lot of sacrifices over the years and very rarely complained about it. I was so happy we were able to get them each one special gift.

A few things since my last post. Paul gave some thought and decided it was time to ask the doctor for a handicap tag for the cars. He had an appointment at a hospital and had to park 2 blocks away and it about killed him, especially lugging his briefcase and information packets. He spoke to his oncologist and of course, he was happy to write him the prescription to get them. Paul told him he wanted a temporary one but he wrote the prescription for a permanent one………..

……we discussed it the next day and we both confessed to thinking “does that mean something?”……..

but we decided he writes everyone a permanent one…..right?…yea….let’s just go with that.

 

And Paul bought himself a cane. It’s beautiful carved wood but I can’t help but think “Holy shit! My 45 year old healthy husband needs a CANE?” ….and sadly, the answer is yes…..my husband isn’t healthy….and he needs a cane…..but I keep praying and hoping that a day will come when this is all a distant bad memory. We just keep looking down that road….easily another year long…..to the light at the end of the tunnel. When we will look back and say “wow! That was really hard but we made it!”

 

 

We Surrender…..

Well, we finally had to wave the white flag of surrender where the house is concerned. We met with our attorney today to discuss what needed to be done. It was rather easy to be honest. She was very kind and understanding and reassured us we were making the right decision. I held it together while we covered all the details and signed the paperwork. The attorney I spoke to a few weeks ago about this came in and introduced himself and talked about how difficult this decision must be and he was very kind as well….but that’s when the water works started.

I keep reminding myself how much better off we will be. How much stress will be off us. How we will be able to stay in Portland and it’s just a house……but at this very moment….right now…..it isn’t just a house. It’s the home we built during much happier times…..times that are so long gone….it’s just heartbreaking.

We chose everything in this home….tile floors because I knew we would have dogs and I didn’t want to worry about the kids spilling kool aid on the carpet….my fireplace that we used every winter while the kids decorated the Christmas tree, the perfect display for our family photos….Paul’s music room where gorgeous music would pour forth while I prepared a family meal…..the carefully selected kitchen that had all the cabinet and counter space 2 avid cooks could ever want…..parties, holidays, a place for friends to crash……finally harvesting tomatoes from last years garden after years of failure……my whirlpool bathtub where I have shed a tub full of tears this last year…..and we have to leave it all behind.

Honestly, I think this is less about losing the house and more about losing the life we had. Just another example of how the ideal life we once had is completely gone…..the days when we had successful careers, financial stability and most importantly, good health.  We struggled so hard for the last several years to hold onto this house. Scraping by, legal maneuverings, sacrificing….and to lose it all in the end is just devastating.  Just another thing I don’t get to keep….another loss….lost the business…..losing the house….losing my husband? Is that going to be my rock bottom?

It feels good to vent, get these things off my chest. It isn’t the end of the world. The benefits most assuredly make it worth it. I want my husband concentrating on getting well….not stressing out over making this mortgage payment. So tomorrow I will pick myself up, dry my tears and move on. God will continue to guide us on this journey and we will end up in a nice, safe home that I am sure we will enjoy…because we will be there together 🙂

 

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.

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!!!!!

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