Wednesday, June 10, 2009

Quality of Life

• Wednesday, June 10, 2009 11:02 PM, PDT
I find that it is time to once again bring you all up to date with Mike. I have an awareness that from here on out my messages will likely be difficult for me to write, and for all you of, difficult to hear. We go into each MRI with very guarded expectations at this point. Starting last December each scan has shown increased growth. Michael has been on numerous forms of chemotherapy, and each has failed to give us the outcome desired. What we can say is that each form of chemotherapy, in conjunction with the Avastin, has probably given Mike slower progression than most people experience given this type of tumor. In some ways Michael continues to defy the odds by presenting very well in spite of this ongoing growth. I also know that know that the brain’s ability to compensate can sometimes give us a false sense of security.

I feel like a reporter writing an article for publication, and I know that this is my way of distancing me from my own emotional fall-out. For now this is how I need to handle this. In the past few weeks Michael has continued to experience focal seizures, and has been feeling intra-cranial pressure on his right temple. He says it is not painful, more bothersome. As we learned on Monday, this is being caused by the tumor in his temporal lobe. It appears to have grown since the last scan, and is likely causing some swelling. Michael’s doctor has increased his Lamictal to help address the seizures. What we don’t want is any break through seizures. This growth also corresponds with some recent short term memory issues that Michael is experiencing. Keep in mind that these are very mild symptoms.

Given the status of Michael’s condition, his doctor gave him a few options to consider. The first is a repeated analysis, that while the Avastin has not stopped the tumor from growing, it definitely has kept the growth at a slower than expected pace. Next, the doctor presented two alternative types of chemotherapy to consider. One is a chemotherapy known to benefit some brain tumor patients, but with a higher probability of side effects to endure. The other is a chemo known to penetrate the brain barrier, with little side effects, but with no proven effectiveness. We quickly dismissed the latter option, and took some time to consider the first. We definitely want Mike to remain on the Avastin, but he does have the option to discontinue treatment with chemotherapy at this point. It comes down to a quality of life issue.

It is easy for me to give my recommendation, as I want to think that each form of chemotherapy around the corner will be the one that stops the tumors in their tracks. Remember, what we can hope for is the progression to stop, not the tumors to go away.
I would like Mike to give it another try, and yet I don’t want to see him suffer needlessly. I want Michael to know that I support him in every decision he makes, and each of the choices are valid ones. Given this, Michael has decided to give this last chemotherapy a try. He will be taking Etoposide, also known at VP-16. It will be taken orally for 21 days, then off the medication for 14 days. If he is able to tolerate it well, he will then repeat this cycle a second time. After 10 weeks he would receive a new MRI. If the side effects become more than he chooses to endure, then the chemotherapy will be discontinued.

I am currently negotiating with my employer a reduction of my caseload, so that I may continue working, but on a part time basis. I encourage anyone who wants to visit with Mike to give him a call. Keep in mind that his energy level is compromised, so he requires a lot of rest. The late mornings or early afternoons tend to be the most optimal times for him.

My love to all.