2011.05.09 Working From Home

The fatigue and more painful headaches have made it so that I am trying to do what work I can from home. I also have daily problems with my vision and physical coordination. I wish I could help my wife more with work around the house and running errands. It has been wonderful to have so many of my coworkers bringing us meals to help out.

2011.04.27 Fatigue & Minor Headaches

I have been trying to work full-time. My employer initially questioned the wisdom of my attempts to do so, but I want things to be as normal as possible for as long as possible, and, I like my job.

Unfortunately, I just couldn't last the day this week. I have had to go home early everyday this week and have had minor headaches yesterday & today.

2011.04.19 The Beginning of the End

Ijust returned from a 10-day trip to Europe where my wife & I celebrated being married for ten years. The trip started off well, but my health deteriorated rapidly. I no longer have full control of the left side of my body. Vision & coordination are impaired. I have to hunt & peck with my right hand now to type. Had an MRI today and the doctor expects the symptoms to only get worse. You know it is bad when the conversation is about you and hospice care is mentioned.

2011.03.03 Stable & Unchanged

I had a MRI scan this morning and when the doctor, my wife, and I viewed it, everything was the same. When everything stays the same when checking on a highly malignant tumor, that is a good thing. I am still hoping for tumor regression some day.

I had a hard round of chemo, using Irinotecan and Avastin. My health insurance is giving my doctor and I problems covering treatment with those drugs. We're trying to solve the problem.

2010.12.29 - Stable & Unchanged

We had another MRI scan today and it appears that there was no change from the last one two months ago. That is good, but still not what I hoped to see on the scan images, which is regression. I had "hard" chemo (CPT11, Navelbine & Avastin). I wasn't feeling good after the CPT11. We might stop using Avastin for a while, but we won't make that decision just yet. My physician recently attended a conference on the use of Avastin and some physicians are questioning whether it is appropriate for continuous use.

When there is diffuse tumor progression, like we saw two months ago, the tumor cells are piggybacking the blood supply of healthy cells. The hypothesis is that perhaps if the patient stopped receiving Avastin for a while, the tumor cells would develop their own blood supply and once that took place, chemo might be more effective against the tumor. It is a concept that hasn't been tested.

I hope you had a Merry Christmas! I did.

2010.11.08 - Disease Progression

My last MRI scan was on 2010.10.21 and it appeared that there was more disease extending toward the back of my head. It was somewhat diffuse. I had "light" chemo (navelbine and avastin) this past Friday and had a consult with my neurooncologist. He met with other neurologists and neurosurgeons and they all thought that there was progression of the disease. My doctor isn't pleased right now because I have tried many of the drugs available for treatment of Glioblastoma Multiforme and the disease is still progressing. My doctor recently took me off Accutane and added Tamoxifen to my list of chemotherapy agents. Other than cancer, I appear to be healthy and happy. I have a wonderful family, I love my job, and I live in a great place. I think that this whole experience may be to teach me humility. I don't like to ask for help and you can't fight cancer alone. You need doctors, nurses, family, friends, and a belief in God and Jesus Christ.

2010.09.09 - Managing With Chemo

My neurooncologist wanted me to try some older, harder to tolerate, chemotherapy drugs and to take them every two weeks. After the first dose of the old, hard chemo, I was sick for five days. I decided that being sick a third of the time (five out of 14 days) was unacceptable. I wasn't going to live my life feeling that way, that often. We came up with a compromise. I would take the lighter, more recently prescribed, chemo every two weeks or so and the old, hard chemo once a month.

My nurse wanted me to try some new anti nausea drug that she hopes will help more. The nausea is the part I like the least. In addition to the nausea, each chemo drug seems to have some effect on my gastrointestinal system, either diarrhea or constipation.

The neurooncology portion of the office is having their annual long-term survivor party soon. I am considered a long-term survivor. Hard to believe that having a brain tumor for five years and a malignant and aggressive one for a mere two of those years qualified me as a long-term survivor a year ago. I don't plan to go to the party this year. I don't feel like much of a survivor after having surgery again four months ago and going back to the old, hard chemo.

I am able to work full-time and workout. I went running after my last dose of the lighter chemo. My next dose of hard chemo is in one week.

P.S. Whoever posts comments to my blog in Chinese, please stop.