Nightmares

Last night I had a nightmare. I dreamed that the Nazi’s had decided that I was to be executed. I kept talking to my family (Not my actual family, I have no idea who those people were), telling them that I was getting concerned about this. The problem was that everyone was busy with other things. They just kept telling me, “don’t worry, it’s gonna work out!”

I guess it doesn’t take a rocket scientist to figure out what that’s about. These types of dreams are happening with greater frequency. Oddly, last night’s dream didn’t really bother me all that much. The ones that really disturb me are when I dream that someone is taking my dog from me. How funny is that? I can live with the idea of Nazis executing me, just don’t take my Lola!!

Last year, when I first received my cancer diagnosis I was given a prescription of Valium. I’ll bet in the first 12 months that I had that prescription I only took a very small handful. I think we did have to get the prescription refilled once. Today I am steadily up to 2 a day. I’m allowed one every 12 hours, and I can tell when I don’t have them.

It’s been 6 weeks since I last received Chemo. Physically, I feel better than I have since before my diagnosis. I feel strong. I’ve lost 100 lbs. Emotionally, I’m a wreck. I’ve felt like crap for a year and a half. I mean there were days that I didn’t have the strength to even pull myself out of a chair. All the while though, I knew we were fighting this thing that’s inside me. No matter how bad I felt. No matter how much I really wanted to just curl up in a ball and stay in bed, I was always able to get dressed, put a smile on my face and do whatever had to be done.

Today feels totally different. Physically, I can do anything. I even mowed the lawn a couple of weeks ago for the first time in well over a year! Yet it gets harder and harder every day to even get out of bed.

It’s been 6 weeks since I last received Chemo. It’s been 12 weeks since I found out that the Gemzar didn’t kill off my cancer. That’s when we decided to bring out the big guns and try Foflorinox. I don’t mind telling you, that treatment kicked my ass! I was grateful for it though. I knew that if I felt that bad, it was working in my body. What’s more, we were taking regular PET Scans so that we could track our progress.

In the 6 weeks that I was on Foflorinox, it did absolutely nothing to slow down the progression of my disease. Now, here we are, 6 weeks since my last treatment. There’s no telling at this moment how much it’s progressed without any chemo.

Dr. Mahmood, my local oncologist, told me that we have exhausted all conventional treatments. There is nothing else approved by the FDA for the treatment of Pancreatic Cancer. My only option now is to find a clinical trial that may be able to help. In the absence of a clinical trial, my life expectancy is less than one year.

It’s been 6 weeks since I last received Chemo. Did you know that nobody wants to pay for clinical trials? The VA, who has, up until now, provided all of my healthcare, will not pay for any treatment that is not approved by the FDA. Lisa’s insurance says that because of my pre-existing condition they will not extend coverage to me for 1 year. Once that year is up, they will cover me, although they do not pay for clinical trial either.

Now wouldn’t you think that the drug companies would pay for these trials? You’d be partially right. They will pay for parts of the treatments. Clearly they pay for the experimental portion of the treatment. What they don’t pay for are the labs, doctor visits, scans, ect… What’s more, because there is an experimental component to the treatment, neither will insurance.

OK, so what does that leave? I wish I knew. Obviously people get enrolled into clinical trials every day. Without them, there would be no new drugs. When it comes time to talk about money, everyone points the finger at everyone else and tells me that I may be responsible myself.

My anxiety isn’t from the fact that I have cancer. It isn’t even that I may not survive to see next summer. It’s purely from the frustration of inaction!!! Much like my dream last night, everyone is busy. I know they’re busy with very important things too. But, I’m dying and I need help.

I’ve had a lot of time recently to think about dying. Honestly, I’m not afraid of it. It’s just that I really love my life! I have a family that I love, a couple of jobs that I love as well. Oh, and don’t forget about my dog! I don’t want to leave them. I don’t feel like I’m done. I have so much more to do.

I’m 45 years old. Husband and father of 2. I’m a 10 year Navy Veteran and a successful businessman. Yet, I can’t call anymore to talk to the money people at the hospitals or the VA without breaking down into tears. Thank God for Valium, it really does help.

Don’t get me wrong. We are not giving up. Not by a long shot. Every day we call MD Anderson, the VA and any other lead we get. We will never give up. That’s a promise I made to my family and I intend to keep it. Just the same, the frustration and the strain of this takes it toll. I would so give up feeling well for them to start pumping drugs into me again. I can totally live with the nausea, the needing my cane, the carrying a chemo pump with me everywhere I go. I would go there in a heartbeat! It’s the waiting I can’t stand. That’s the part of this that is killing me.Image

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