Just kidding. I think I have procrastinated in creating this post for long enough. This is being written as I undergo my sixth treatment of Carboplatin chemotherapy. I actually have an IV in my arm at this moment. My wife calls the treatments "carbo-loading."
Vision - I continue to experience double vision and still nearly always wear an eye patch. Complete strangers continue to make remarks related to me being a pirate. I do not mind it on the surface, and I'm in no place to talk, but the lack of originality is upsetting. Anyway, my neuro-opthalmologist tells me my vision has shown significant improvement since beginning treatment. She notes that the left/right misalignment is nearly gone and the up/down misalignment is getting there. I cannot tell much difference but I guess it is reassuring to hear a certified professional tell you that you are not cross-eyed.
Chemo - All-in-all I have been able to handle chemo and its side effects much better than I ever expected. Through five treatments I have vomited only once, maintained my luxurious mane, avoided catching any significant colds, have not sustained any cuts, and, as far as I can tell, I am not currently deceased.
Side-effects - I feel somewhat foggy after each treatment and find I am very susceptible to motion sickness for a few hours. The night of the treatment is always followed by a very irritating pain in my hips and other joints for a few hours. The toxicity of my body fluids for the first 48 hours after each treatment has not been a problem to my family as far as I can tell. The doctors recommend that I flush the toilet twice after each use during those hours - hopefully this is done to be sure my family is safe from any toxic fluids and not their way of saying I smell.
The nausea was tough at first. I vomited on the Monday morning after my second treatment. I was up early to prepare for an important work meeting and somehow did my 30-mile-each-way commute anyway. Because I was warned that the side effects would get progressively worse with each treatment I was surprised when the third treatment felt more like the first. During my fourth treatment one of the folks at Piedmont told me they'd changed my anti-nausea medicine (given via IV right before the Carboplatin) for the third treatment. This has been a huge improvement to both nausea and fatigue levels. The fatigue has been significant regardless of the medicine but treatments 3 through 5 have been nowhere near as bad as 2. And my wife says I am extremely old and that this is probably why I am tired. Oh.
Death - There have been scientific studies which show that being dead can be very bad for your health. I am happy to report that, unlike when we first found the tumor was recurrent, I am no longer constantly thinking about dying. I have stopped writing in the notebook I bought to tell my daughter about my life, etc, in case it was suddenly over. I no longer feel like this is imminent. I am actually getting better. The now-relieved emotional weight of these thoughts is difficult to put in to words. I would like to try, if only for posterity, but not now.
Needles - I have come to hate them. I keep a notebook to help me remember questions to ask the doctors, keep record of tumor-related experiences, etc. In this notebook I add a tally each time I receive a freaking needle. I have treatment every three weeks. Around a week before each treatment I have to get blood work and I have an MRI before every third treatment (2 months). So since the first blood work ahead of my first treatment in April I have been pricked 17 times. Most were fairly routine but 3-4 were very painful due, at least in part, to insufficient hydration on my part. Having an IV fail, requiring additional needles to continue treatment, has been the worst. Some bad news for, like, every musician ever: it appears I have discovered a reason people should avoid heroin.
Chemo Brain - It is very real. I have lost (and eventually found) too many household items to count and changed various different routines to prevent more of this from happening. Not only is my short-term memory completely horrible, but so is my short-term memory. When you open a refrigerator or walk in a room and cannot remember what you came for then you have some idea of what it is like. Not constantly, but still.
Size Matters - In the time I have been writing this I received the results of the MRI I had before today's infusion. Through five infusions the tumor has been reduced to around 45% of the size it was when chemo began. More than halfway gone. It is working. If this pace continues I will not have to do chemo for as long as originally projected (every three weeks for up to a year). Wow.
Run For Your Life - I've recently learned of the Southeastern Brain Tumor Association which is based locally and does neat things like tumor-centric scientific research, conducts clinical trials, hosts support groups (in the middle of the week during business hours grrr), hosts conferences, hosts 5Ks... This year's 5K is scheduled for the morning of Saturday, September 21st. My wife is an avid runner who claims exercising helps her relax. I guess she has never heard of not exercising.
Nevertheless we have registered for the event and she created a team for us. The team, like this post, is named "No Brain, No Pain." Open invitation: here is the link to the team page if you would like to join us for the event or make a donation to the SBTA. Among other things it comes with the guarantee that you will beat me, even if you elect to crawl on your hands and knees.
Remember when you wanted what you currently have - It is hard to type with a stupid spike in your stupid arm so I am stopping here.
