For the first time though this journey I really feel helpless. I will admit, this is a particularly tough week. Lisa and I have been spending each evening packing. This is the week that we surrender our home back to the bank.
We were fortunate to find a home here in Portland that we can rent (substantially cheaper than the mortgage on this place). It’s not ideal, but we didn’t expect it to be. It will work though. Most importantly, if something happens to me, and I can no longer work, Lisa can afford (just barely) to keep the place.
My ability to continue working in the future is really part of what is bothering me. I’ve posted about this in the past, but realized after it was too late, that I posted this blog on the wrong page. So let me bring everyone up to speed. If you’ve heard this before, I apologize for repeating it.
On June 4th I went in for my normal chemo treatment. I had just had a PET Scan a few days prior, so I knew I was meeting with the doctor to review those results. The news was not what we wanted to hear. In fact, what he told us was that the current treatments were not working. During the previous 6 weeks that I was on this new regimen my cancer had spread as if I were receiving no treatment at all.
My first reaction was to say, “OK, then what are we going to try this time?” He just shook his head and said, there are no other treatments for Pancreatic cancer. Apparently, with this it’s just 2 strikes and you’re out. He went on to tell Lisa and I that my only hope was to find a clinical study that might include a drug that could help me.
By this time Lisa was sobbing openly. I was still numb and dumbfounded that anyone could tell me that there are no other options. Lisa asked that question that we really didn’t want to know: Without finding a successful solution, how much longer do I have to live? Dr. Mahmood hedged on this quite a bit. Obviously he can’t look into a crystal ball anymore than I can. “Typically” he said, “with this type of cancer, patients will last 8 – 10 months without treatment.” He did go on to reiterate that I am not the typical patient. I am MUCH younger (30 years) and healthier than the typical patient. It is clear though that the prognosis is bleak.
We talked about options for treatments. MD Anderson has never accepted my insurance in the past. The just don’t see eye to eye with the VA. So I asked about the possibility of going back to The Cancer Treatments and Research Center (CTRC) in San Antonio. This is the Cancer Center that did my original surgery. I also started my chemo here. Being a research facility, and one of the best in Texas, I thought we’d have a decent chance here.
The Doctor’s office set up an appointment for us to meet with Dr. Lu. I had met Dr. Lu in the past and really liked him, so I really encouraged. I felt like this was a new beginning for us.
The day came for us to go to CTRC. When we got there I couldn’t help but feel as if Dr. Lu was completely caught off guard by us. We talked for quite a while and he was brought up to speed on my history since I had last been at CTRC. At that point he excused himself saying he was going to go to the research office to see what studies I might be eligible for.
I have no idea how long he was gone. It felt like hours to me. I kept falling asleep while we waited for him. Finally he came back in with two phase one studies in his hand. Now I am exaggerating when I say this, but to me, it felt like he walked in threw the paperwork down on the table and said here you go, here are two for you to choose from. That’s not the way I want this to work! I want to see some enthusiasm! I want him to walk in and say, I think this is the answer for you! Instead I get, “maybe you could try this one…”
I have read through paperwork on clinical studies before. I am not a novice at this anymore. I read through the study her recommended. It was for a drug typically used for patients with prostate cancer. The study was pretty much open to anyone with advanced cancer that had exhausted all FDA approved studies. In other words, as I read it, your chances of survival are minimal anyway so let’s see what happens when we give you this drug!
Lisa and I walked away from CTRC feeling completely let down. I had so much hope that the answer was going to be there. They had all been so wonderful in the past. In retrospect, I think they were just in over their heads.
In my mind, that really just leaves one more option. I have to get into MD Anderson. They are not only the best Cancer center in Texas, but one of (if not THE) best in the world. Now, as I’ve said in the past, they are not happy about anyone from the VA coming to their facility. The VA, you see, has a terrible reputation about paying it’s bills. However, when we called and spoke to the business office they were very receptive.
Somewhere in the middle of all this, I received a call from the VA. It was a very nice lady in the Harlingen (Texas) office. Her office is the one that approves the vouchers for Veterans to receive care outside of the VA system. She informed me that while the VA had no problem with me going to MD Anderson, and they were more than willing to pay for the treatments, it appeared that I had already exhausted all conventional treatments, and the VA does not pay for non-FDA approved treatments.
The VA finally agreed to send me to MD Anderson for a couple of visits so that they could come up with a treatment plan. Once they came up with that plan then the VA would evaluate their ability to pay for it. MD Anderson said, “We’re not going to waste everyone’s time with that!”
All this time, Lisa is wrestling with MD Anderson and I’m wrestling with the VA. The VA would say, we told them they would pay, what more do they want? MD Anderson would say, we don’t like the way the voucher is worded, we want a few more things put into it. In the mean time we’re stuck in the middle. I would say to the VA, if you would call MD Anderson, you could have this worked out in a couple of minutes. The VA says they are physically unable to make those kinds of outbound calls. So we say to MD Anderson, here’s the lady’s direct line, if you’ll call her we can get this worked out in no time! Reluctantly (very reluctantly) she finally agreed.
In the mean time MD Anderson suggested that we apply for financial assistance. I assumed that this was going to come from the drug companies. After all, aren’t they the ones that really want to see me get into their trials. If they can cure me, they could make gazillions of dollars.
We had to scrounge up paperwork from everywhere. Fortunately this was a couple of days before we started packing the house, so I was able to lay my hands on it. We got every submitted that MD Anderson asked for. Of course, two days later they called back and asked for even more stuff. Again, we were able to get it to them within an hour or two of their request.
While we were fumbling around getting our paperwork together for the financial aid package, apparently MD Anderson and the VA spoke to each other. They worked everything out, or so we were told, and we had a green light. As it turns out, MD Anderson is still unhappy. Although the VA did include all of the language that MD Anderson wanted, it was put in the addendum section of the voucher instead of the main body and that’s just not good enough!
Yesterday we received word that our financial aid package was denied. I thought that was really odd, because we really don’t make any money to speak of. It turns out that the financial aid was through a federal program (not the pharmaceuticals) and because I’m already insured by a federal program (The VA) this program won’t touch me.
So there you are. That’s my story. I’m 45 years old. 10 year Veteran of the Navy. I have a wonderful family. Two jobs that I adore. I am a taxpaying, productive member of society and I have somewhere around a year to live without treatment. Everyone is sympathetic to my plight, but unwilling to help. The VA is a typical bureaucracy; they people I talk to want to help, but can’t. Our point of contact at MD Anderson seems completely put out by us and all of our phone calls.
I don’t know where to turn now. I suppose the thing to do is start looking for research studies in other parts of the country. The real problem with that is that even if I do get accepted, I know that it’s a gamble. I would so much rather be close to my family through this then say Chicago.
At this point I am ready to go to the media. Is this the way that we treat our Veterans? Is this what healthcare is going to look like in a few more years. Surely this is the type of story that they carry. Perhaps if enough attention is brought to this, someone will relent and agree to cover my treatments.
If you’ve read this far, I really appreciate it. I know this was long, but it’s been building for a long time. Perhaps you have some advice. Perhaps you want to share it with the media? I’m going to.
I don’t know what my future holds; no one does. I do know this… It’s been since May 21st since I last had any treatment for my cancer. It’s not getting any better. We have to do something before I absolutely reach the point of no return!