Tuesday, 11:30 PM
High-Level Journal Summary: A second snapshot from me following my second brain surgery. This time, the degree of aggressive acceleration being applied is exposed -- along with photos that reveal the impact of my 12/27/07 brain surgery.
As the high-level picture gets filled out a bit more, I can only hope it reveals how aggressive we are being about getting pathology results in the quickest way humanly possible. I am assuming the most challenging pathology results possible, in which case every day like this matters critically.
The bottom line is that we need to be smart and action-oriented. At the same time, I need to recover from surgery, take all kinds of new drugs in informed ways, and even get down to new forms of exercise. All these things are being done. Top to bottom, my extended medical team is hopping into full gear and pushing hard. There are times when this is needed. Until we have our pathology, we must assume that time for us is NOW.
Countdowns:
1.) Pathology review on 1/4/08 (Friday) at the National Institutes of Health (NIH).
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 4 days ago (the day after my second brain surgery). My new epilepsy drug of 64.8 mg of Penobarbital, twice per day, seems to be having some initial impact. We'll have to see how patterns emerge over time.
Actual Journal: Things continue to go at an extremely aggressive pace right now, and for good reason. We have to get the left frontal lobe brain tumor pathology report as soon as possible. With that information, we can take immediate action.
Aggressive
As alluded to on 12/31/07, I must assume that I will be diagnosed with the most aggressive form of brain tumor possible. I must also assume the most most aggressive form of brain cancer treatment possible. One last thing -- I must also assume the most aggressive timeline for getting all these things done.
We are counting down as if this is exactly what is going to happen. I am not there yet, but as I do simple things like write this online journal entry and speak briefly with friends and family, I am getting myself ready for hearing all this. Basically, I have to be ready to hear these pathology results from Dr. Howard A. Fine at NIH/NCI/NOB (National Institutes of Health / National Cancer Institute / Neuro-Oncology Branch). Further, I have to be ready to start that radiation the very next day, as quickly as humanly possible.
Basically, if I am not assuming that every single day is of absolute critical importance to treat this new tumor growth, then I would be making a huge error in judgment. Why? Because fast-growing brain tumors do permanent damage, and the longer I wait to attack back, the more damage can be done. I need to be ready to hit hard and fast, albeit smart as possible.
Photos
Once again, photos really help to fill in some of the gaps as to where we are at right now. Here are a couple of photos which say much about my 12/27/07 brain surgery. These are the "safe" ones -- the photos which really won't send kids squealing to the bathroom toilet.
This surgery used the exact same scar line as my 5/5/05 brain surgery, so I do not have two scars, per se. As well, the same craniotomy section was used. Dr. Kelly and his team removed the same "flap" to get access to the enhanced brain tumor area in my left frontal lobe. Stitches were used this time instead of staples for physical reasons. The scar tissue from my first surgery is different from normal flesh. As such, this scar tissue needs to be bound together for a longer period of time to help prevent infection. (This is a purely medical reason.) That is why stitches were used. They will be in place for about another 2 weeks before being removed, which is longer than the staples from my first surgery were in place.
There are two things to notice about this photo. On the forearm, there is a catheter that was used to inject antibiotics to help prevent infections after surgery. But most interesting to me is my wrist. The bruise actually extended all the way up to my entire thumb muscle. Everything was black and blue. What was this from? On my wrist, this was from a technique used to get the most accurate form of blood pressure possible during brain surgery. I counted over a dozen holes in my wrist right after surgery. I do not know the details, but this was an invasive procedure that got critical information as accurately as possible. According to my current understanding, the bruise on my thumb was from another device used to make sure that muscles still working as tumor was being extracted. Certain actions could be taken that would cause each finger to move, and that action was taken through a device inserted into my thumb muscle. I would love to know more about this device, but I believe that is the basic concept that was at play.
Other forms of aggression this week
More and more of what has happened since 12/19/07 is being reveled, as time permits. However, the action of a number of people is dominating time. In the meantime, here are the high-level events that are also underway (in time order of delivery today):
1.) Pay all sorts of medical bills. I have to stay on top of this, as unsexy as it all is. Hundreds of thousands of dollars were just spent, and I need to figure out how much is my responsibility and how much will be paid for by my group health insurance (which expires at the end of February 2008).
2.) Pathology results are being pursued with aggression each and every day. Literally. Pathology HIPPA forms will be faxed to NYU Medical Center on 1/2/08 to help keep this process flowing as fast as humanly possible.
3.) Sleep! My body has been beat up by brain surgery, no doubt. I can see it when I look in the mirror. I will recover, but in the meantime, what is the best way to heal? Well, I may have all kinds of drugs to take, but my body knows so much of what to do. I just need to rest as much as possible. When I do, I sleep incredibly deeply, although I do wake extremely parched. I suspect that the Decadron steroids to reduce brain swelling is lending to my relative dehydration. I chug Gatorade in amazing proportions. I do not recall drinking this amount of fluids ever before. (Even so, I barely "pee" when I use the restroom.)
4.) All new drug prescriptions have been formally entered into my Palm Pilot so I am reminded at the exact time when they need to be taken. I have new forms of drugs to take that:
• Reduce swelling in my brain after brain surgery. This drug is called Decadron. It is a steroid and makes me ravenously hungry. Fortunately, I only have to take it until 1/6/08 as I slowly wean off of it.
• Balance the impact of taking Decadron. I take Pepcid twice a day to balance the impact of Decadron.
• Better control my Simple Partial Seizures (SPS's).
• Control pain from brain surgery.
4.) Exercise! I started today. I walked for 30 minutes, keeping things very simple. I walked circles around my house so that I could be home immediately as soon as I started to not feel good. I need to be as fit as possible for whatever treatment comes next. The good news is that I was in excellent shape going before all this happened. My standard discipline was in full gear. I just want to compensate for hardly any exercise before my second brain surgery. My life ended up being relatively usurped with a number of practical things, as one might imagine before surgery.
Bottom line
Another quick snapshot of doing everything possible with my medical team to press ahead as quickly as possible right now. There are times when this is called for, and now is the time. We are responding with the best that is within us, and we are trying to do so with a degree of intelligence and aim that will only serve us well -- not hurt us.
