This is a fair question, as the impact of hearing that you have a brain tumor can be quite debilitating. Plus, there is so much info to wade through, some of questionable value, most not particularily encouraging, that it makes sense to stop for a moment to collect your thoughts.
Be Aware
It is ridiculous, irresponsible and incorrect for a doctor to coldly assert that a person with a gbm has no hope. The most important thing to know right now is that there are long-term survivors.
Grieve
I didn't try to pretend to be a tough guy when I was told I had a brain tumor, but I was able to hold off the tears until I returned home. I cried and cried again. I was about to venture out into the unknown and I feared the loss of my life and the impact this would have on my family.
Take a Step Back
Recognize the tumor as the Lord’s invitation to go deep with Him. This trial will deepen your faith and cultivate compassion in your heart for others for whom you are being prepared to help in the future. We will all be in eternity by the close the century. It is incumbent on all of us to recognize our mortality, and that even if the Lord should add 40 years to your life, the day is coming for all of us to meet our Maker. Get it right, get the big picture.
Fight Back
Fight back by taking ownership of your own medical care. Be as aggressive as your body and personality permits. Recognize that an advocate can be used to supplement your research efforts and to provide support and encouragement. Feel empowered to dispense with gloomy doctors who offer no hope for your survival. Get a free prayer pager and discover the value proposition.
Surgery
If the neurosurgeon recommends surgery, based on the tumor's size, location and your general physical condition, do it and do it now! Put on your game face, and charge into the battle. If the neurosurgeon does not think that surgery is a viable alternative, seek a 2nd opinion. Sometimes the plan is to shrink the tumor via chemo or other methods before surgery, but an aggressive tumor requires an equally aggressive response, so have the surgery performed as soon as possible. Insist the removed tumor be kept alive for sensitivity testing.
Near Term Follow Up
The standard gbm post op treatment is six weeks of conformal radiation (30 treatments) with concurrent Temodar chemotherapy (42 treatments). This will start about 4-5 weeks after surgery, depending upon the pathology report and your recovery from surgery.
Long Term Follow Up
There will be 4-6 weeks between the end of the near term treatment and the start of the long term treatments. I used this interval to research available options. I visited Duke, MD Anderson and UT Southwestern. I contacted survivors in the 2-5 year range to discover what had worked for them.
Keep on Keeping On
Stay the course – keep taking your meds, even if no one would know you had stopped or pared back. Get bi-monthly MRIs. Use the same imaging facility for your MRIs, even the same MRI machine, same set of radiologists, same film printers, same exact routine. Get in a medical groove. Not a rut, but rather build your own custom supply chain of sorts to provide logistical support of your total war against the beast.
