Blogging in B Minor

I haven’t written for a few days – it’s been quite busy and I’ve been getting used to this new program. The first few days were a bit trying. The good news for me is that the dose hasn’t resulted in the nausea I was concerned about. I have a lot of what I will describe as tightening in my stomach area – it happens right after I take this drug, almost immediately. That continues all night and into the next day but tends to subside in the afternoon. The more difficult side effect is fatigue and I’ve talked about that before – it’s a very common side effect. Finally, dry mouth – it’s more of a nuisance. I just drink a lot of water for this.

The second item is I have sent my entire case, again, to the UCSF Brain Tumor Center. Dr. Mitchel Berger is the Chair of the UCSF brain tumor program and I have a lot of trust in him in terms of being a strong sounding board. He was instrumental and THE key in my decision to move forward with surgery in June. He will be reviewing my MRI scans from October 1st and comparing them against scans done 6/26, 5/18 and 1/18. He will also take a look at some dictation including the operative report from June 29th. I essentially want to see if he is in agreement with the assessment of the Neuroradiologists here that we have no change in the tumor and it’s stable. Last time we went down this road, we had Neuroradiologists here at the Neuroscience Institute that felt there was insignificant growth and that surgery was not the right call and Dr. Berger strongly disagreed. Dr. Peter Black at Harvard agreed with Dr. Berger. I had surgery. I expect that this will not be a repeat of that situation but I am a huge advocate of 2nd and 3rd opinions so I are going through the same due diligence. Again, you are your own advocate so you have to do these types of things. You cannot just take doctor’s assessment and accept it and move on. Had I done that back in May, I would have just been having an MRI in September and perhaps having surgery now! 5 months would have passed and who knows what could have occurred. I have treated this now so I cannot stress enough that if you are dealing with a brain tumor, please get 2nd and 3rd opinions. It doesn’t matter how good the doctor is – we are all human and doctors make mistakes.

With all of this, I am just remaining positive. I know why I am doing this and I am just sticking with the program. It’s chemotherapy, the side effects are unpleasant but I have to live with them. Most important of all – I have to and want to live and enjoy my life. Therefore, I need to forget about the chemotherapy from the standpoint of negative side effects and how they may effect my life and how I feel. I am accepting and grateful for what this is doing for me, that I can continue to be here and enjoy my life – and through the grace of God I can extend my life long enough so I can avail myself to a cure for this disease. In the meantime, I will enjoy my family and everything that life has to offer. This is the essence of what I am striving for every day. And I’m not perfect. None of us are but I’m enjoying my life as best I can and trying not to be distracted by this tumor. Sometimes it’s hard – just the other day I sat in my son’s room and this trial got to me. I saw one of those picture strips you get done at the fair of he and I – it says “Best Friends” and it’s 6 pictures on a 2″ wide by 6″ long card. We made silly faces in each picture – you know, tongues sticking out and just silly stuff. It got to me. Just thinking about the future. Things like this are hard sometimes. But I am now at a point where I can also look at something like this and realize that we will have so many more times like this to look forward to!

That’s all for now on the treatment front.

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