Treatment Update

For some reason this has been a particularly troublesome post to write. I think we are just weary lately. Not the kind of weary that you brush aside and move onto something else but weary that just sticks with you like an extra backpack you wear around all day. It gets heavier the longer you carry it. This week has been really difficult for Greg as the cumulative effect of treatment they have been talking about has set in. His fatigue is really keeping him down a lot even through out the day. I can hear him in the morning doing his thing in the office but usually he is resting soon afterwards. He has finally been adding an extra nausea pill to get him though the day and make it possible to eat even though food has lost its taste for him. This is a good time for him to be really regimented because he knows he should eat even though his stomach doesn’t.

Even through all the things that are trying to keep him down the other side of him is fighting with the fact that he can’t do what he wants. His rational mind is constantly in conflict with what his body is telling him it’s able to do. Of course, this wouldn’t be recognizable to most anyone who talks with him or sees him. It’s as natural as breathing; as soon as the phone rings I can hear him muster up his strength and composure. He might give some signs or hint that he isn’t feeling well but nothing that would indicate the real struggle that is going on. It is really remarkable when you think about it. The last 8 weeks have been nothing but relentless doctors appointment and procedures, enough to make the strongest buckle but yet on he goes.

We were able to meet with the radiologist yesterday to go over the MRI results and the treatment plan. We have been particularly anxious about the MRI because we haven’t seen anything since one day after the surgery. We were also worried about the added treatments from last week. That alone really put a lot of pressure on Greg and his patience level. I think it really added to making this week extra tough. The radiologist brought us back and showed us his scans and compared them to his post surgery scans. From the beginning, I was sure they got all of the tumor and there would be nothing to see. Amazingly, microscopic cancer shows up on MRI scans. I wasn’t prepared for that. Even as the doctor was telling us that he was pleased with how well Greg was responding to the radiation up to this point I kept thinking. It’s still there…. and he kept talking about the tumor. How is there still a tumor if the removed the visible one 8 weeks ago?? Somewhere in all of the post surgical visits I missed the fact that his cancer originated very close to the brain stem so there was a portion of the tumor they couldn’t remove with a margin. Meaning there was no way to safely remove all of the tumor. That was the part where they were able to maintain his motor function, speech, etc because they didn’t get too close to the brain stem. So the surgery was still a success. It’s the treatment that is challenging. Which, for the record, I wish they could switch because at this point the surgery seems like the easy part.

So, the  doctor made another change in the treatment plan. He rescinded all of the new treatments that he added the last week. He even docked two more off the original plan making today Greg’s last external beam radiation treatment. I think God just knew that Greg had reached a limit and needed a break. Sounds great, well not so fast, again. Now the doctor would like to do what is called a Cyberknife treatment. A very specialized, super intense treatment that he is hoping (yes, hoping) will radiate the lingering cancer site adjacent to the brain stem to give us some more time.  There would be 5 total treatments after one week off starting the day after Easter. Sounds easy enough. The exception is that Greg will have to go back on the steroids and the treatments can last from 90-120 minutes each day and included sedation. To put that into perspective, up to now he has done 5.6 hours of radiation over the last 5.5 weeks. They want him to do up to 10 hours in one week. That is a lot to think about especially since he is ready to call it all good today. I have searched all over and don’t see a lot of negative notes about the Cyberknife so perhaps it just sounds intimidating.

So we left the appointment numb– again. I still can’t put my finger on how I think we feel about it. We asked what would happen if we didn’t do the Cyberknife and we were told the cancer would come right back probably within 6 months.  It would also be a waste of all the treatments up until now since the radiation efficacy is based on volume over time. Great! Just what we wanted to hear. So today has been another emotional roller coaster. We did end up getting some good news this afternoon. Since the external radiation is complete Greg doesn’t have to take the oral chemotherapy everyday. He will likely be set up on the 5/23 rotation of 5 days on and 23 off starting in the next few weeks. This will be the first time he is medication free since before the surgery. You know it’s bad when that news didn’t elicit any real excitement.

My hope is that after a few days off medication and away from the radiology department he will see this final step as just that. An end to the radiation portion of the treatment. Something we can tuck away and know that we are done with it. Thats the goal anyway.