It has now been over a month since I last wrote in this space. I have not been especially motivated to write as there has not been much to talk about on the tumor front and I have a hard time subjecting folks to my ramblings when there are no major changes or interesting developments. Fortunately we are now nearing a big day in the BKP saga and motivation has returned.
Last Monday (2/22) I had an MRI which, once reviewed by the proper authorities, will tell us how my recovery is going and what's next for me. On Monday 2/29 Devin and I are driving back up to Duke and I have an appointment scheduled with Superneurosurgeon on Tuesday 3/1. I don't know exactly what this appointment will cover but I know we're going to review the aforementioned MRI with Superneurosurgeon and I suspect the results of this will be crucial. Ideally the MRI will show no remaining tumor and I will be able to go back to work and resume normal life. If there was some remaining tumor from the operation or some growth since the operation it's possible that I could require radiation. I'm sure there are other potential outcomes, too. Regardless, I know I will need MRIs every so often for the next several years so I do not expect the doctor to pronounce BKP dead, nor will I need him to do this to consider the visit a success.
The best case scenario, as far as I know right now, is that the tumor is mostly gone and I do not require any radiation. I'm also hoping the doctor gives me the go-ahead to return to work and resume all regular activities. If he does I expect to be back on Monday 3/7. I've already resumed driving relatively short distances and this has gone fine. In fact, I feel mostly normal except my vision is still sometimes blurry. The blurred vision was actually a big risk of the tumor resection surgery (the surgery at Duke) but I came out of it with my vision the same as before the surgery. It's usually manageable - more of an annoyance than an impediment - but some days it really wears on me. I'm hoping the doctor can provide some guidance on dealing with this or fixing it. To this point the only advice I've gotten has been to avoid any unnecessary stress so I've responded by not opening my medical bills.
The worst case scenario, as far as I know right now, is that the doctor took off his watch during the surgery, left the watch in my head and really wants it back.
Anyways, generally speaking I've been doing well. I just want to get past the blurry vision and get back to work. I feel like I'm slightly more recovered every day and by my own measure I'm probably nearly done with recovery. Devin and I went for a hike last weekend with some friends which was more of a challenge than I anticipated but proved valuable in helping me begin to get back in to shape after a few months on the couch. It seems like I have been sleeping a ton lately: 9-10 hours each night, sometimes even more. I don't mind this because I'm trying to let my body tell me what it needs and just rest as much as I can. It's possible that the tumor coming out of the pineal region of my brain has something to do with this because the pineal gland regulates sleep but for the most part my sleep patterns have been the same, just longer. The scar from my latest surgery is the most significant of the three and is healing nicely. It looks healthy, but more importantly it looks bad ass.
I'll wrap this up for now and I'll have another blog post after my meeting with Superneurosurgeon next week but I just want to reiterate how grateful I am for everyone for the support of all shapes and sizes over the past few months. Virtually everyone has been awesome to me since all of this started and I feel you should know this whole experience has strengthened my opinion of human decency/humanity. On the YouCaring site I mentioned in this blog in the January 13th post (https://www.youcaring.com/paul-rehm-502641) I'm already nearly at 50% of my goal. When I add in the checks people have sent outside of YouCaring it's even closer. I'm going to attempt to respond to each of you personally but for now I just want to thank everyone for the gifts of food, activities, money, support/backup at work, support of Devin and literally hundreds of other things.
Many of you have heard me say this and I'll probably end up saying it several more times but since I haven't yet put it in writing: if and when I get though this ordeal with a clean bill of health I will only be able to look back at all of this as a positive experience which bought me closer to my friends and family. I am sincerely so, so grateful.
