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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

When you think there are no words….

well, after a year and a half of battling this horrible, horrible disease it looks like we are ending back right where we started from…. CTRC (Cancer Therapy and Research Center) in San Antonio. This is where we went after Paul’s whipple procedure in April of last year. Instead of going to SA for treatment, we went to the Corpus Christi Cancer Center where they followed the protocol that was recommended by CTRC. So we haven’t done any less than they would have done in San Antonio…..the problem is none of it is working.

The 6 month treatment of Gymsar and radiation didn’t work as evident from his bowel obstruction with evidence of cancer cells….then we tried 6 weeks of a 4 chemo cocktail and the results of his PET scan last week show that is doing nothing to slow down what appears to be the Attila the Hun of cancers. Several new “hotspots” showed up in the PET scan including lymph nodes in his chest, something on his ribs and a spot on his hip bone. We were told today there is nothing more available in Corpus for us to do and we need to investigate experimental treatments at a larger cancer center.

what do you do with that kind of news?

“I’m sorry but there is nothing more we can do for you here….”

This ordeal is exhausting. I always need about 24 hours to absorb news like this. I fall to pieces, cry, freak out, sob in my husbands arms about how I can’t bear the thought of even a day with out him, how I can’t believe this is even happening and losing him will be a TRAGEDY…..I mean really….I know so many people are vested in us…..I mean, our story alone tugs at the heart strings…..getting back together after 20 years…..people KNOW how in love we are and how perfect together we are….and to even THINK about a tragic end…..I just can’t….I just can’t….

We are far from being done. We both know there are trials going on at CTRC that he could do very well with. He is young, healthy and has a great attitude. They will be happy to try something new and progressive on a candidate like him, I know it. I refuse to believe there isn’t more we can do. Fighting to the finish is the only way we know how…..but the possibility of the “end” is looming larger and larger…..

I can be as positive as I want but I also have to be realistic. This thing is a monster and it isn’t going down any time soon. Knowing that this thing is continuing to wreak havoc on my husband with no sign of slowing down is disturbing on a whole other level. I can’t even fathom that nothing can stop this….how is that possible?

This much I do know….the level of my devastation at losing him will be immeasurable. I even felt some anger today….not at him of course, not at God…..but at the prospect of being left behind. I told him today if this doesn’t work he gets to go to heaven with Jesus and I’ll be stuck here in this shit hole for the rest of my days…..a life that won’t hardly be worth living. But I will be forced to live it because of my children. The concept of abandoning them in my grief simply is not an option. But the idea of spending 30 years without the love of my life is just……no words can describe……I can’t even imagine it. He goes on an overnight trip and I can’t wait for him to come home. My favorite part of my day is snuggling in bed with him and our little dogs watching food network or swamp people or some other silly show. When I get frightened during this fight he holds me close and knows exactly what to say to make me feel better. How will I survive my most devastating loss with out him?

I wish I could just live in denial…..that it just isn’t going to happen…..but that isn’t me. In fact, sadly, I have known this would be my destiny for the last 20 years. In my early 20’s I lost my step father tragically and suddenly. Being the love of my mother’s life, her devastation was beyond measure. In truth, she has never been the same. I spent 2 years in therapy dealing with abandonment issues and my intense fear of loss and my insistence that I was going to find the love of my life and I would lose him tragically just as she had done. Over the years I was finally able to let go of my “death thing” and not worry so much about losing my loved ones. So of course, this all seems an incredible premonition or cosmic joke.

even if it doesn’t come to fruition and he manages to beat this thing the damage is already done. Every ache and pain is cause for alarm and will be even if there is a complete cure and he lives another 30 years. Is this a lesson in faith? I don’t believe God works that way. He didn’t give Paul cancer so we could learn lessons. He didn’t give it to him at all. Things like this just happen but lessons can be learned through the suffering. My faith is the only thing that is going to get me through this ordeal. My husband will take me as far as he can but eventually it will be down to me and God. He will not let me down…..the question will be if I can put all my trust in Him.

…And the adventure begins!

This morning Lisa and I are on our way to San Antonio.  Today is my very first round (with many more to come) of Chemo.  I can’t say that I’m looking forward to this.  I will say though that I’m looking forward to getting this whole thing started.

Today we’re going to CTRC (Cancer Therapy and Research Center) in San Antonio.  There they will put a drug called Gemcitabine into me.  The whole thing should only last about a hour (at most).  As soon as I’m done receiving the juice, then I’m going to meet with my surgeon who is going to remove the last of the tube remaining from my surgery.  That, I’m very excited about!!

One of the things I’m going to ask my surgeon and oncologist this morning is, can I have a drink?  I have not had a single drink since I originally got sick back before Christmas.  If you remember we originally thought that my liver was the problem.  As it turns out they didn’t even touch my liver during my surgery!

I’m not a big drinker, but occasionally I’d like to have a beer or a glass of wine.  Take last night for instance.  I was at the Theater last night working with the Cast of The Producers on some of their music.  It was a great rehearsal and the cast sounded terrific!  In addition I got some great news from Mary and Charlie Chapa.  I would have really like to have a beer or a glass of scotch last night to celebrate, but since I’ve never actually got the green light for that, I abstained.

Well, looking at the clock it’s time to get my shoes on and start heading to San Antonio.  Once again I’m reminded of Frank’s line (from Rocky Horror).  I want to walk into CTRC, hold my arm out and say, “Do your best inferior ones!!!!”

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