Blogging in B Minor

I wanted to post an update here even though I don’t have a lot of energy. It’s the easiest way to keep everyone up to speed instead of repeating everything over and over. I would like to thank everyone for your thoughts and prayers. It is so much appreciated. Your comments left here on my blog to posts such as this one have meant so much to me and my wife. They are uplifting and just add that much more to this situation in terms of inspiration and hope. I just want you to know that.

First off, aside from some weakness on the left side of my body, mostly in my left hand/arm, combined with headaches and some common side effects of this type of brain surgery I am doing well. Cognitively I feel on par.

Details: The intraoperative brain mapping showed that the tumor was fully involved in the primary motor cortex – not what we had believed entering the day. We had believed the secondary cortex was involved and if so, tumor resection to some extent would be possible with some deficits occurring, albeit potentially temporary. However, resecting any of this out of the M1 area (primary motor cortex – which controls all of your motor skills – left brain to right side of your body and vice versa) would result in a total, permanent deficit such as hemiplegia and we had an agreement prior to the operation that we wouldn’t play that card yet so early in the process. Therefore, we didn’t resect and that is of course disappointing because tumor resection is your first line of defense. But, you have to move on to the solution and not get mired in the problem!

On the positive, my Neurosurgical team, who did just an absolutely amazing job, spent the 4-5 hours getting there and having wide access to the area for more than that reason (resection). We were able to obtain three very good biopsy tissue samples – samples you wouldn’t obtain through standard biopsy procedures using a “burr hole” into the skull. The reason this is important is if you obtain a biopsy and have one sample and grade it, you “hope” that those cells are representative of the entire cell type makeup of the tumor. You see, you have to grade a tumor based on the highest grade cells you find. You could have cells that are grade 1, 2 and 3. You may only find one grade 3 cell, but if you do, the entire tumor has be graded as a 3. You have a much better opportunity to accurately grade the tumor by having 3 excellent samples, as we did in my case, then you do if you use the burr hole method. Ok, enough of an explanation!

Preliminarily, all of the biopsy results have come back showing this to be an anaplastic astrocytoma which is a grade III astrocytoma (a type of glioma). It’s more malignant in nature than a grade II which is considered “atypical”. Regardless of the pathological disposition, they are all treated with malignant therapies. I am now going to be heavily focused on Temedor and a package Chemotherapy called PCV that has shown amazing results in patients with this specific tumor, an anaplastic astrocytoma. Needless to say I am extremely disappointed. I will not be dwelling on it but the fact is, once it is confirmed through extensive pathology later this week, it’s grade 3 brain cancer and because we cannot resect the tumor – or we won’t at this point in time given the deficits (but that may be a decision later), I am going to have to keep it under control through other means. No, I don’t want to focus on stats and prognosis but you have to wade into that and I am starting to get into that because I have an important clinic on Thursday to discuss treatment options and like everything else, including my 2nd and 3rd opinions that drove our decision to get surgery done, I must continue driving for answers and solutions although a cure is not something that is going to be possible.

I’m having quite a lot in the way of headaches, tracking meds for post op brain swelling and pain relief, etc. but in my spare time, for 15 mins at a time or so, I’m pulling together info for a meeting I will be having at the end of the week with the entire case team at the Neuroscience Institute. These next two weeks are critical – strategy will be set and things will be set into motion and they must be right.

Rachael, Aidan and I really appreciate all of the thoughts and prayers during this time. Everyone around us has been absolutely amazing. Aidan was a little taken aback by the incision on my head when I first came home but I told him it would fade and I haven’t been allowed to shower – and somehow I convinced him it’s kind of “cool”. LOL! Rachael is doing well and that is also next on the calendar! She will be delivering, probably via c-sect as it turns out, the last week of July so I’m hopeful in gaining strength back to at least help a bit but with Chemo and so forth it’s going to be hard for a while. However, God has sent an army of supporters our way and we are so blessed.

More to come….

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