9/16/11---Update

Well I haven’t gotten on here in a while to update things because the road has continued to be just as rocky as it has been the entire summer. I’ll start with the brain treatment and go through the events leading up until now and hopefully be able to explain why I’ve sort of disappeared without hurting anyone’s feelings…

The brain treatment went according to plan and the doctors are extremely happy with the results. The actual procedure was hell…it was a test of endurance and was terribly uncomfortable. My head was locked into place and the entire procedure took about three hours without being able to move at all. I was laying on a carbon fiber table, which is an incredibly hard material, that offers no cushion or give whatsoever. My head was not just locked into place, but it was pressed into place which after a while became so painful I could have sworn the back of my head was bleeding. My tailbone and back began hurting incredibly bad too because of the table, but I was not allowed to move any part of my body in fears of throwing off my head positioning by even the slightest bit. By the end of the procedure I felt like I had run a marathon…I was close to tears twice during the treatment when the pain started to become unbearable, my back and head were sore, I was sweating, and my head felt a little off from normal. At home I experienced a few headaches and slightly blurred vision, but other than that I felt alright.

A few days later we met with the doctor who performed my SIRT procedure. It was a very quick appointment and we learned that the liver was in decent shape. The first round of treatment when he was only able to get about 60% of the radioactive material packed into the tumors showed some signs of concern. There was still a bit of activity going on in terms of disease, although it was less than it had been prior to the operation. The side of the liver from the second treatment when he was able to get over 90% of the radioactive materials packed in looked great and showed no signs of activity from the disease. The best part is that he is able to repeat the procedure on the troubled side of the liver in the future although that wouldn’t be for a few months since my body has gone through so much in such a short period of time.

The Thursday of that week we met with my regular oncologist who we were hoping was going to review the rest of the scan results and present a plan going forward for us. The last few days however, I started to develop some pretty bad back pain that was starting to radiate down my right leg. In the waiting room, this really started to cause a lot of discomfort and I had to lay down on the couch. When we met with the doctor I had to lay down the entire time because my leg was in incredible pain and was only comfortable in certain positions. The meeting did not go as great as we planned. While she was happy about the progress the liver was making, there were still the small spots on my lungs which had some time to get a little bigger, and the new developments with my spine and brain were not steps in the right direction. Our options came back to something we started to try but never really gave a fair shot…xeloda pills. This is basically a pill form of the 5FU chemo I had previously received, but it does act in different ways which might be able to help me. The tough news was that the clinical trial we were positive I’d be able to try had the xeloda failed, I am no longer eligible for due to the metastasis in my brain. Unfortunately there is no way to fight the rules of a clinical trial. The worst part was that my doctor did not have any immediate suggestions or alternatives of what to do. The xeloda is pretty much our last mainstream option for treatment so we need to come up with more options. The pain in my back/leg we figured was being caused by the inflammation around my spine and could have been affecting a nerve just like sciatica. So the plan for that was to give it a few days and if it didn’t improve then I’d call her.

I was pretty down from the news we had gotten at the doctor and it took me a few days to really take it all in because it was a very difficult pill to swallow. I had my phone off for a few days and didn’t respond to much in terms of email or texts…I just wanted to have some time to figure things out. My spirits were lifted though a bit when my dad told me of an email he received from my doctor saying that she had found some possibilities of clinical trials that we could look into that allowed for brain metastasis which was under control. The plan for now would be to start the xeloda for about a month and gauge how I am feeling to see when the appropriate time to look into one of the clinical trials would be.

That takes us up until the last weekend of August and I can tell you that a lot more has happened since then. I’ve decided to keep this one a little more private. While I was in the hospital for the last two weeks I decided to keep that part of my battle between myself, my family, and a few close friends…I’ll have another update for everyone shortly, but I am still on a lot of the same medications I was on in the hospital so I am frequently drowsy and sometimes have a hard time sitting down to write. So for now I’m just taking it one day at a time and controlling the things I can control…this is just another bump in the road. Thank you all for the continued support and be RELENTLESS in everything you do.