Post Surgery Check-up: Good News & Bad News

Thoughts and feelings by Josh, organized and edited by Fay.

Well, I received some good news and some bad news today... and waited an extremely long time. What gets me through the wait is knowing that the doctor is taking extra time with people in my situation.

First the good news. The surgery was a success. The grid monitoring that was done proved to be a huge aid to the surgeon in guiding him safely during surgery - though it was a terribly painful and stressful process, it was well worth it.

During my final surgery, they were able to "shock" the electrodes to guide them through surgery to remove as much of the tumor as possible.  In addition they removed a small seizure focus point. The seizure focus points that remain are far away from the tumor site and would have been difficult to track and remove. The other GOOD news is that the pathology of the brain tumor shows that my tumor has remained a Grade 2 Oligodendroglioma - it has NOT upgraded. 

Oh, and my staples are out and I can finally wash my hair... tomorrow! Only about 10 of the 54 staples hurt when the came out. They do not provide pain medicine and the pain was only a few seconds for each one. Also, one stitch was removed where the drain had been placed during the emergency surgery.




Now the bad news: Approx 20% of the tumor remains. It is too deep and too close to the motor cortex to safely reach. This is where the mapping helped, they could see how far was safe to go before permanently leaving me without the use of my right arm or worse. He pushed it as far as he could while ensuring that I didn't come out of this with any deficits. Dr. Chang (picture above) said that the Neurologist who was present during surgery was scared about going any further because when they touched certain areas, my hand and face twitched.

The 80% of tumor that was removed had well defined, clear boarders. The 20% that remains has roots and branches that are not well defined. Dr. Chang explained that the if you picture the tumor as black and the healthy brain as white, the part of tumor that is left is gray - blending or mixing with the regular brain and therefore, inoperable.

My case will be presented to the "Tumor Board" this Friday.  This is when teams of experts meet and discuss patient cases. My Surgeon, my Neuro-Oncologist, a Pathologist and Radiologist will all attend to discuss my treatment options. My latest MRI, day after the final surgery, as well as all of my case notes will be presented. There is some disagreement of treatment plans with a slow growing tumor type. We were warned that disagreements will be had and that I will receive a call with all of my options. We were told that there is no single right answer - there is some controversy over what treatment is best.

Since surgery is no longer a safe option for me, we are looking at chemo, radiation, or the wait and watch plan.

Other items: I am now allowed to lift up to 25lbs - carefully, I've developed a rash caused by one (or all) of the medicines, my brain is still swollen, it hurts to cough, and I can exercise as tolerated. Now that I have tapered off the steroids, as of this morning, I'm anxious to work off the more than a few pounds that I've gained.

My tumor, thankfully, is still slow growing. I've come to know so many families absolutely torn apart by this disease. A family friend passed away just last night and it actually hurts to think of his family...his wife and his two very young kids.

So, while it is hard not to feel depressed, I know I am fortunate.
For now, I will enjoy my first beer with my father-in-law and focus on my recovery.