06.20.2010 - Six Weeks Post Op

Things still aren't what I wanted them to be. I still have head pain and I still feel a lot of fatigue. My aerobic ability is absolutely shot. I can only do so much until I need to lay down and rest. I am back to work full-time though. Most of what I do at work is sitting and periodic light walking.

The head pain is manageable. I take a couple 200mg tablets of Advil and any pain usually leaves within 45 to 60 minutes. I would really like the fatigue to go away. I need to push myself each day until it is gone. I need to sleep more each day and end up going to bed at the same time that children do.

The right side of my head still had some swelling, but it is minor. There is no good reason why I should still have head pain. All I want is to feel normal again.

05.22.2010 - Two Weeks Post Op

I had my third craniotomy of the right temporal lobe and the neurosurgeons removed all of the new growth. It had doubled in size since that MRI on 04/13/2010 where my neurooncologist and I had discovered it. It was still pretty small though. The incision site has healed very well and there is little visible swelling that remains. The surgeons used dissolvable stitches instead of staples this time. It looks a lot better post-op than staples did the last two times. I was conscious after surgery really quickly. They released me from the hospital before I should have and I had a lot of seizures at home, which meant I had to return to resolve that issue (adjusting seizure medications).

After I was released again, the pain was difficult to manage. I am able to manage the pain now, but did not expect to still be taking strong pain killers so long after surgery. No one seems to know why I have the pain, but at least it is getting better.

We saw the neurooncologist yesterday and developed a treatment plan. I will have to get a port, which seemed scarier than it actually is after I learned more about the procedure. A port is a permanent place where I can receive chemotherapy drugs and can have blood drawn from. It is a big deal to get one, but it should reduce the number of future needle sticks that I will have in the future. The time line for when treatment should end is indefinite right now. We will just go from MRI scan to MRI scan and see how I am doing. I will be taking a few different chemotherapy agents and biologics. I received my first dose of chemo that day, something called Navelbine.

My neurooncologist also thought I would be appropriate for an experimental clinical trial of a brain tumor vaccine. We will see if he can get me into that program.

04.23.2010 - Surgery Is Scheduled

It has been scheduled. I will have surgery in two weeks. Both neurosurgeons believe this will be a relatively simple procedure and the area of new growth is small and appears to be contained.

04.13.2010 - New Tumor Growth :(

I had another MRI today and unlike all of the other ones in the last two and a half years, my neurooncologist saw new tumor growth. I was disappointed. He is actively working on a plan, which may include restarting Avastin and use of the Gamma Knife, which is radiosurgery. When will this tumor just go away? Cancer can't kill me. This is just one more battle in the war and I will be victorious.

03.14.2010 - Seizure Control Sans Side Effects

For the past week and a half, I have been using Vimpat in addition to Keppra. The Lyrica was cut out of the plan at least a week or so before that after it caused my feet to swell, which was a very bad side effect according to Drugs.com. It has been working well. My health has been good overall, though I haven't been able to run. I ran a few times a week ago and my knees hurt. I have been trying to focus on weight lifting instead.

02.19.2010 - Seizure Control With Side Effects

I saw my neurooncologist today after my MRI scan and the tumor was still stable and unchanged, which is great. I started another five-day round of Temodar, an oral chemotherapy agent and will be doing that monthly. The plan now is to continue with that until October, which will be three years post-diagnosis. I had to stop taking Avastin because it was causing me to have high blood pressure. He wanted me on either Temodar or Avastin until the three-year mark. On 01.25.2010, I saw a seizure specialist and she took me off Lamictal and put me on Lyrica. I now take Keppra and Lyrica. I haven't had seizures since then, but Lyrica can cause weight gain and I have been slowly gaining weight. That side effect really sucks! I talked to my neurooncologist about it and he said there are other drugs that could work without that side effect. Let's see how much weight I gain before I object to the effect.

12.31.2009 - Looking Forward To No Seizures

I am looking forward to a year of no seizures. We are still adjusting the anti-convulsant medication and the addition of Lamictal has helped. I had my last appointment with my neurooncologist for the year.

Avastin seemed to be a drug free of side effects, but that may not be the case. My blood pressure has been elevated the last couple of visits to the doctor's office and I am usually someone with textbook pressure - 120/80. I never have high blood pressure. I asked my chemo nurse whether any of the drugs I was taking can elevate blood pressure and she immediately replied "Avastin." I will now have to take my blood pressure a couple times a day for a couple weeks and see if this elevation is going to be a regular thing. If so, I could either continue taking Avastin and possibly take drugs to lower my blood pressure or stop taking Avastin.

My blood counts were all good. I have a five-day round of oral chemotherapy with Temodar to begin this evening. It's never fun, but it's not that painful either. I like to eat at night and you have to take Temodar on an empty stomach. It's only five days though.

Having no more seizures is one of my goals for the new year. It's not like I have control over it though.