I never know what my write up is going to be until I sit down and start to review all the information, conversations and point of views from others in the family. Obviously, when my dad or mom calls me to discuss everything the doctor tells them I have an initial reaction whether it is angry, sad, excited and/or confused. Honestly, I usually feel all of these after the news. But when it comes time to sit down and write his update I never really know what to say and it just comes out. So here goes. This is what I know and what you probably want to know.
On Monday, my parents went to see the surgeon that did my dad’s Whipple. He reviewed my dad’s new scans and he came to the same conclusion that CTCA told him…your liver tumors have grown. Since May, they have doubled in size. Contrary to what we thought, the cancer can spread even though the main (pancreas) tumor has been removed. Given this information everyone knows…we have to do something NOW.
The surgeon sent my parents to the oncologist in the hospital, whom they have never met, to discuss the ‘now whats’. The good news is that my dad has options. The bad news is, well, they all suck. Not to be negative Nancy over here but they do. They all want to achieve the same goal, which is to shrink or eliminate growth of the tumors. You know when you see those drug commercials that say, Take this drug for whatever and then they very quickly mumble the side effects? Well yeah, that’s what happens in these appointments. I am not sure which is more concerning, the side effects or the lack of evidence/research of the drugs or the cost that isn’t covered by insurance. So which would you pick? I’ll break it down for you:
#1. 2 Chemotherapy drugs that he will take for 3 months and at 3 months they will rescan him to see if they are being effective. He takes them for 2 weeks and then he is off of them for 2 weeks. The side effects of these are severe nausea and he has to be watched like a hawk because it can cause heart and kidney failure. Keep in mind my dad has one kidney. Good news is that it has been shown to be 70% effective on shrinking or keeping the tumors the same size. That’s awesome!
#2. Chemo delivered directly into his liver. That is the type of chemo everyone is familiar with that you see on TV (or have seen other people endure-CANCER SUCKS!) with hair lose and weight lose, etc. YUCK!
#3. PRRT- I am not sure exactly what that stands for but what I do know it is a series of 4 shots over a year. Every 3 months, my dad would need to fly to either Houston or Switzerland to receive the shot. Here is the thing about this drug, from what I understand it is the best (easiest) option so far, but each shot costs $40k in Houston or he can fly to Switzerland 4 times for a year and the drug is $10k per shot. So he could get all 4 shots in Switzerland for the price of ONE of them here but he would have to pay for the shot, flights, hotel, etc.
#4. The last option would be to do something called a Gallium scan. As my dad described it, it is the HD version of the MRI/CT scan. The typical MRI/CT scans that we get come back looking more like SD, kinda blurry but you can see some tumors. The Gallium is the HD version. You would be able to see any tumor anywhere in your body. Do you think it’s cheap? No! But this would be part ‘a’ to this option. This scan would need to be done before he did a liver transplant. If the scan showed no cancer anywhere else in his body then he could get a liver transplant (or go on the liver transplant list to wait for a liver). If they found cancer somewhere else in his body then he would not qualify for a transplant. That’s scary enough but he would have to move to Miami. That is where the liver would be delivered and he would have to be there. He couldn’t travel or leave because to get the liver you have to be available at the drop of a pin.
So, which would you pick? Luckily you don’t have to and neither do I but unfortunately my dad does. He has decided to choose Option #1. When determining his option, the chemo pills seemed like the easier, less life-altering choice. He will try and avoid the chemo injection as long as possible. The PRRT is incredibly pricey and he would have to go to Switzerland 4 times. The PRRT will be the next step if he has an adverse reaction to the chemo pills or when they stop working because yes they will stop working just like his other medication. And, finally, he hasn’t reached the last resort of the liver transplant. However, if he wanted to do this it would probably be better sooner rather than later incase the cancer does spread. Every option has its risks and benefits (don’t think benefits is the correct term when talking about cancer treatments).
So there you have it. That’s all the information we have for you. Now, if you just let me explain how this looks in my head.
Imagine yourself standing at the bottom of Mount Everest. Now, where you are standing it is sunny and birds are chirping but when you look up you see some rain. Ok not so bad. Then you look up a little further and you see snow and wind. That’s manageable. But then you look up higher and you see snow, wind and tornados all around and you are thinking well how do I make it to the top? You step back to look at the peak and you see rain, snow, wind, tornados, and Godzilla is on top knocking helicopters away from the peak. Now, you glance around and wonder how am I ever going to make it to the top going through all that? But then you remember that a lot of people have reached the top. They persevered and they made it.
The options my dad has are not great. When you have cancer they never are because like I have said, Cancer SUCKS. But when I heard the news from my dad about all these options I thought to myself, Thank goodness he has options! I hate that my dad has cancer because he doesn’t deserve it for many reasons. However, I have to say that my biggest worry is that one-day the doctors are going to look at him and say, “There is nothing else we can do for you.” That happened to us. When he first got diagnosed the doctors in CO told the family that there was nothing they could do for my dad. If he was lucky, he had 6-8 months to live. Luckily, it was not the type of cancer they thought and we immediately went elsewhere because you shouldn’t say stuff like that unless you know for sure!!
So here we are 16 months later. He has been poked, scanned, cut open, injected, multiple ER visits, traveling, researching, praying, and relying on friends, family, and co-workers to help him continue to push through his journey. I have to say…if you think the last 16 months were difficult then look up at the peak of the mountain. He (with all of us by his side) will be pushing through the rain, snow, wind, and tornados to get to the top just to try and make friends with King Kong so he doesn’t throw him off. If anyone can make friends with King Kong and convince him to share the mountain it would be…the most interesting man in the world.