As promised, I'm going to share more of the details from my visit to Dana Farber last week. I guess I think it's important to keep all of it real. It was a positive visit, but honestly it's truly never easy, and this day was no different.
Our day started before 7:00am when we left the house to arrive by 8:00am for bloodwork; bloodwork that revealed that my White Blood Cell count was still in the gutter and that I had to continue to wait for it to go up before restarting the meds because of my safety. It also resulted in a smaller dosage that hopefully will still attack and kill the yuck. And still, here we are a week later, and I find myself in the same predicament. My WBC are moving like a sloth and apparently in reverse. Getting that news on Tuesday was certainly frustrating and left me feeling a bit paralyzed and defeated.
Back to last week - the visit also included an appointment with my oncologist, an infusion of some meds for my bones, two painful shots in my tush and my first visit with a neuro-oncologist, including a thorough exam, done by his fellow, of my brain function, of which I passed with flying colors.
Most of the two hour visit was also spent talking about my symptoms and experiences I've had prior to diagnosis and after. He concluded that it was probably best to prescribe a low dose of some medication for seizures, as it is his determination that the long term issues I've had with my eyes and the numbing sensations in other parts of my body could be small seizures. I was not surprised, but actually a bit relieved, because I've "known" for some time that these vision and numbing sensation episodes have been small seizures; I know my body, sometimes too well. The hope is that by being on the meds, things will not be as frequent and I will not have to panic every time it happens. He is really not worried about the "seizures" because they come and go, which is a good sign. He just doesn't want the small to ultimately become big, thus the meds. The meds have been a simple addition to my daily regiment and if they can give me some peace of mind, it is certainly worth taking them.
Eight hours later after more, unscheduled bloodwork, we finally left, exhausted from the day.
This truly is a full-time job and on this day, I undoubtably worked my entire shift with few breaks.
So as I continue to wait for my WBC to rise, I try to take advantage of the less side effects I seem to be experiencing and reflecting on the positives, like today's visit to the radiation oncologist when she said, "Well, I think you're doing outstanding." She doesn't know all the ins and outs but as far as recovering from the radiation, she was very pleased. And her being pleased, gives me some relief as well.
And a welcomed distraction to the Big C has been this nest of newly hatched birds. I'm slightly obsessed with getting a glimpse of them on a daily basis.
"The Real Deal is always going to win in the end."