Wednesday, January 11, 2006

Going My Way

Glioblastoma Multiforme (my diagnosis) is a BAD brain cancer. It is very aggressive and nasty. It is bad, bad, bad news. The five-year survival rate is less than one percent. The statistical prognosis is 14 months, and the median prognosis is 12 months, and that is WITH TREATMENT. Without treatment I would be statistically unlikely to see my next birthday in July. It's just the worst diagnosis I could have received from that tumor.

One thing I have learned as I have talked with my doctors, and as my brother (who is an M.D.) has talked with many cancer specialists on my behalf, is that even under these very grim circumstances I do have some things that are working in my favor, that are similar to characteristics of the rare patients who have survived longer than my prognosis. The things that are going "my way" are:

1. My age.
2. The location of the tumor in the right temporal lobe, which is easier to remove surgically if it recurs. The other cancer cells in my brain are more likely to form tumors in the same general area where the first tumor occurred. Had it been near some parts of the brain where autonomic functions are controlled (breathing, heartbeat, etc.), my prognosis would have been worse. My neuro-oncologist mentioned that sometimes glioblastoma patients die when a tumor forms near the brain stem and is not treatable or surgically removable, and it puts pressure on the brain stem and causes the patient to stop breathing. In the Book of Mormon there is a story about a really bad guy who suffered an "ignominious death." That term, "ignominious death," kept coming to mind while the doctor described that final exit scenario. I still shudder at the thought, and hope that we can somehow keep this very aggressive cancer from spreading anywhere near the brain stem or other important areas of the brain.
3. The presence of the Gliadel (chemotherapy) wafer in my brain, which was placed there during surgery. This has been proven in studies to be very effective. My surgeon said that it doubled or tripled the number of three-year survivors. In general, the expectation is that it will at least "buy" me a couple more months.
4. The surgeon did a complete resection (removal) of the tumor. All of the tumor was removed, plus a small margin around the tumor. Because of the nature of glioblastoma, there are still many infected cells in my brain that may recur as tumors, but he was able to minimize the biggest concentration of cancer cells as much as possible.
5. My post-op recovery has gone very well. While I have some physical limitations with regard to driving and strenuous exercise, and while I am still prone to seizures and fatigue, I am considered in all other ways to be high functioning. My memory is intact, my mental abilities are intact, and my neuro tests were all very good. I was cracking jokes on the phone with my brother within hours after my surgery. I have no paralysis or motor skill problems or muscle weakness. If I had lost some significant functionality, the chances of surviving subsequent treatments and surgeries would be lessened.
6. I am otherwise generally healthy and do not have any conditions that would make me a poor surgical candidate, in case they need to go back in to remove any new tumors that pop up. I had no surgical complications from my first craniotomy, and it looks like I am less likely to have major complications from any future procedures.
7. My neuro-oncologist and radiation oncologist are both familiar with glioblastoma treatment, and are well versed in the appropriate standard of care. In addition, there is also familiarity with emerging technology, clinical trials, and alternative treatments in case more needs to be done. If I had gone to a major cancer center like MD Anderson or Sloan-Kettering, it looks like my treatment would have been no different.
8. And finally, I know that there is much faith being exercised on my behalf, with prayers and even fasting on my behalf.

Perhaps these favorable conditions are a clue or a key to unlocking the miracle that we are praying for in earnest. I hope so.

One of the caveats that doctors gave, while discussing these favorable conditions, is that nothing is certain; there are so many variables that govern one's actual lifespan in the face of this very, very, very bad and aggressive cancer. Even with these things going my way, there is no new prediction about my prognosis. But these are hopeful things to know about, and maybe somehow I can leverage these things to survive as long as possible.

Ultimately, as I keep reminding myself, when it comes to prognosis, there is the doctor's time and then there is the Lord's time. The latter will actually govern how long I get to stay here. We are exercising our faith by petitioning the Lord for a miraculous healing and an extension of life. We have enough faith to ask. And we have the "but if not" faith, knowing that if there is a different will for my situation, it is part of a larger design that we can trust in. In the Old Testament we learn that Esther had the "but if not" faith. She asked her family and friends to pray and fast for her before going to the king to try and save her people. She knew that by doing this, her life was in peril. She had enough faith to get people praying and fasting, but she also said, "If I perish, I perish." She had no idea what the outcome would be, but she had enough faith to do all she could and then she put the outcome into the Lord's hands. In trying to follow Esther's example, we are doing all we can to bring about this miracle, including asking for the combined faith and prayers of our family and friends. But "If I perish, I perish." Now, of course, really, I would rather NOT perish anytime soon! I'm sure Esther didn't want to, either. But how this petition will be answered for me is unknown, and so we just trust that whatever the outcome is, it will be the "right" outcome in the greater perspective of the One who created me and loves me and gave me this life as part of a purpose and plan designed to help me reach my highest potential. In other words, the One who is always going my way.

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