Tuesday was a pretty crazy day. Heather and I left for the hospital at around 5:30 in the morning. I had an appointment to get the ascites drained at 8 am. They pulled 9 liters out of my abdomen. 9 liters. That's almost 2 and a half gallons of fluid. In a matter of an hour and a half, I lost 20 pounds. It felt amazing to have that much fluid removed, but I paid for it the rest of the day. The analogy the doctor gave me was that my organs were suspended in the fluid, much like a baby is suspended in the embryonic fluid in the womb. When the fluid is gone, my organs are then much heavier, and sag. I felt like I had been punched in the stomach a few hundred times. I feel much better now.
I then had some blood work done, and we moved on to my oncology appointment, with Dr. Khan. Dr. Khan has always been a little cold. She's always been very direct and honest, but to the point, and not very empathetic. This appointment was much different. She was warm and caring. She answered my questions, and made me believe that she really does care about what is going on with me. Dr. Khan told me that I shouldn't worry about my diagnosis, that it's her job to worry about the cancer, and I should just worry about getting the most out of each and every day. She said that no one knows how much time they really have left, and that we should all live like today is our last day. I can't say that I can fully put all of that worry on her, but, the burden was definitely lessened. I'm very, very lucky to have Dr. Khan on my case.
The fluid build up is being caused by a few things. First, my portal vein, (which isn't really a vein in the traditional sense) is being hampered a bit by a tumor. The portal vein brings blood from the intestines and spleen and dumps it into the liver to be cleaned. When the portal vein is stressed, it causes ascites to build up. Another issue is that my salt intake is way too high. I need to be consuming less than 2000 mg of salt per day. A quick study of things around the house shows that a lot of the pre-packaged food that I've been eating is really high in sodium. For instance, the pop tarts that I sometimes eat for breakfast or a snack, are around 1/4 of my sodium intake for the day. A can of tomato soup that I have in the cupboard is nearly 3/4 of my sodium allowance. I'm going to have an interesting time coming up with affordable, high calorie meals that are within my sodium budget.
Dr. Khan also prescribed me another diuretic to take on top of the one I'm currently on. I have noticed the difference already- I definitely use the restroom a lot more, and I produce more when I do. Sorry, that's pretty gross.
My treatment plan is currently in place, which is definitely the most exciting news of all. The tumor board doesn't think that I'm a good candidate for the radiation therapy Y-90 procedure that I mentioned in a previous post. They placed me on a drug called "Sutent". As far as drugs go, this is fairly cutting edge, as I understand it. The drug blocks the protein that allows new blood vessels to grow inside tumors. Most people have this in their genetic code, but the disease I have, von Hippel-Lindau disease, has a mutation in that gene. This tells my body to allow blood vessels to grow inside tumors as much as it wants. They hope that this will both stop the growth of tumors, and also shrink the current tumors.
The side effects of this drug are pretty much the same that you'd expect with chemotherapy. Nausea, vomiting, diarrhea, dizziness, fatigue, and hair loss. They say the side effects are pretty rare though. Dr. Khan also increased my dosage of the injection I have been getting. Now, instead of one shot that feels like a tetanus shot, I get two, in both butt cheeks. This makes walking a bit uncomfortable, but already, the stiffness is starting to subside. So Sutent also costs $8500 per month. Luckily, they hooked me up with an application to get the drug for free from the drug company, and gave me my first month on good faith that I'll get the grant. That's $102,000 per year. Holy shit. Hopefully the grant goes through.
My blood work came back great! I had one liver enzyme that was a little elevated, but still not outside of the normal range. Since this hasn't been elevated before, they seem to think that it was due to the fluid pressing on my liver and causing a bit of stress.
It was definitely a long day, but a good day overall. I'm so glad that Heather was able to come with me, and meet Dr. Khan. I'm glad that she was able to drive, because there was no way I was in any shape to make the two hour trek back to Kalamazoo. Thanks to Dustin and Carrie for allowing us to crash at their house, and for watching the dogs for us. You two have been an amazing ally for Heather and I.
That's all I've got for now. I'll post a picture of the receipt for the sutent a little later.
