Once again, my treatment plan has dramatically changed. I was supposed to start treatment with an experimental drug on Friday after going through a short series of tests. Tests which have been done before at WashU only a short time before heading over to the NIH. The first red flag to pop up was the levels of a certain liver enzyme that they test for in my blood work. The levels were perfectly normal over a few days before hand, but were consistently twice as high (possibly indicating liver damage) after 3 blood draws at the NIH over two days. The scans didn't show any liver damage, I haven't had a drink in over a month, and there is no reason for the levels to spike out of no where so this was truly bizarre. However, the blood tests weren't nearly as concerning as the "haze" found on my head CT here. The clinical trial protocol states a patient can't start the trial if they have an untreated brain tumor which the NIH docs that this haze might be. Although the MRI the next morning proved that the haze was just nothing, it was a very scary 24 hours waiting to find out.
Even though I don't have any tumors in my brain, it turns out I have several in my skull hitting up against the membrane (dura) that surrounds my brain. I've had a bump on the back of my head for awhile that got bigger and smaller without the docs really knowing for sure whether it was a tumor or from some kind of injury. At first I thought for sure it was from the cast I had to lay in for radiation, but the longer it latest, the more confident we were that it was a tumor. It has been getting substantially bigger and more sensitive recently, and they were thinking about radiating. That got put off once the clinical trial plans started building up since I can't be undergoing radiation while in the trial. The MRI showed that the tumor was worse than it appeared in the other scans with it reaching from the dura to the skin. This makes them worried it could break through the skin which would be bad for I'm guessing many reasons although the NIH docs didn't specify. They also believe this big head tumor seeded the four others growing on the inside of my skull. My other tumors throughout my body have been growing fairly rapidly lately as well making the overall state very concerning. So after several NIH docs combined with my regular docs talked it over, they decided the best course for me is to return to St. Louis for combined radiation and chemo.
Although it is disappointing, I agree that this is the safest route. My cancer has responded fairly well to radiation during my first round of treatment. The chemo regimen that I will be put on has been tested and has a pretty good success rate as a second line treatment as well. On the other hand, only 6 or so people have been treated for only a short time with the experimental trial drug. For all we know, it might not have any effect on me which I can't afford right now with the rate my tumors are advancing. Also, the NIH docs will be amending the trial protocol so that I will be able to start the trial when my tumors are in a more stable state. I'm guessing this would be a few months down the line at best. And even though I never started treatment, I am somehow still a part of the trial and will have any subsequent travel to D.C. paid for by the NIH. Overall, it was beneficial for me to make the trip since we learned more about the current state of my disease, have a few more experts in my corner to advise on my treatment, and was able to have a bit of fun over here as well.
The fun Anna and I had consisted of fairly short intervals in between time spent at the hospital. We were able to have dinner with Anna's cousin Sasha on Friday night, and then we had lunch with my friend Maria from college before we flew out on Saturday. Although I wasn't able to eat much due to my poor appetite and general gut ache, it was great conversation and a welcome break from cancer related activities. We were also able to go to an art museum in D.C. on Wednesday which was nice. The overall few combined hours of these activities saved Anna's and my sanity for the trip.
There were several frustrating things about the trip. First of all, we are definitely not used to having to deal with security. Once we got our permanent passes it wasn't too bad, but being questioned about our coming and going in and our of the NIH campus was board line ridiculous. The cab company we had to depend on to get around was awful. The wait averaged 30 minutes and the drivers didn't listen or know where they were going half the time. And even though it was great being able to stay at the Children's Inn at the NIH for free, we felt very out of place in the midst of everyone else who consisted of very young families.
By far the hardest part has been my declining mobility and increasing pain. It is a constant challenge to get in and out of bed, chairs, and cars. Unless I'm in the several peak hours of pain meds, I am unable to pick things off the floor without my lower back erupting in pain. I am essentially in a constant degree of pain which is the worst at night and in the morning. Laying down is about the only relief I get unless I load up on the pain meds and am in the 4 hour or so window to peak drug activity. Then I'm able to walk and move around close to normal. A few doses of IV pain meds this afternoon combined with the sleep they induced/enabled really helped me out today. I will be starting methadone tomorrow which based on what I've read will better control my pain over longer periods of time. Even better would be if the treatment I'll start getting on Monday will be effective and reduce my pain like it has in the past. Treatment time will be short since the one chemo drug is a short injection and the other two are oral pills. I'll be having radiation at the same time which I should be getting mapped out for tomorrow. Hopefully this will be the plan that finally sticks.