So how's my brain doin' these days, anyway?

On Thursday I had an MRI and consultation with Dr. SRS Expert/Radiation Oncologist at the University Hospital down the road.  Per usual, it was a lovely road trip with my dad (thanks again for picking me up, dad!  It sure was luxurious to rest on the drive home!!).  The MRI didn't show anything that my body wasn't already telling me, but it sure is validating to see the pictures, and most importantly, it's terrific to have the opportunity to talk to the doctor.  In summary, the two important results are 1) Lloyd continues to be dead, with the following being my favorite things in the report, "The previously described heterogeneously enhancing metastatic lesion is overall stable in size. No new lesions." and 2) swelling is slightly decreased but still pretty bad.  I could have told you that, lol.  I feel it daily. 

SO, more on the swelling!  We had lots of questions for the Doc on this one.  If Lloyd is stably dead and not growing, what's up with the swelling?  Why is my body continuing to mount an immune response up there???  Potential answers, in no particular order:  1) A few stray cancer cells could be mucking about, and my immune system is trying to catch them, 2) Extended swelling like this is more commonly seen when the tumor is in a location such as mine, close to the spinal column, 3) It's not uncommon for this to go on for 2 years even!  Wow. 

Taking steroids is the primary thing to do to combat the swelling, and yet alllll of my physicians are wanting me to get off of the steroids, even Dr. SRS Expert (I mean, I'd like to be off of them too...).  I tried the steroid step-down he prescribed last time (12 mgs daily for 1 week; then 8 mgs daily for 1 week; then 4 mgs daily for 2 weeks).  I'm stuck on 8 mgs per day.  Twice now I've tried to decrease the dose, with noteworthy awfulness.  Not only do I feel terrible the day after I decrease my dose, but I have a few minor neurological symptoms now!  If the swelling gets too bad, I have tingling/numbness on my forehead, the tops of my hands, and my right pinky.  I don't care for any of that specifically, but I especially don't care to get started down the road of long-term permanent neurological side effects, so I'm not rushing the steroid step down until I have some REALLY good brain days.  And each day is different, so I have no idea when they'll come.

He did mention that depending on where we're at with swelling and steroids, there IS another drug we could try.  It's called avastin, and I haven't spent MUCH time researching it yet, but here's a popular press article that conveys what I feel is sufficient information to get us started.  In the article it's used to combat necrosis, which doesn't seem to be my problem, but there are also other articles showing that it's been used to combat swelling (edema).  I didn't link to those because I found them to be harder to read.  It's an IV drug, so it would be administered by Dr. Oncologist on some schedule or another.   Point is:  OPTIONS.  There continue to be options, huzzah! 

My next MRI is in ~two months.  I'm sure that my body will make some more progress between now and then! 

The steroids are particularly hard on my quad muscles, steadily making my body weaker and weaker.  Dr. SRS Expert reminded me of this (not that I need ANY reminders of this, lol).  I told him how hard I'm trying to not to get terribly weak: I walk the kids to school 1.4 miles roundtrip daily; 30 min. aerobics in living room almost daily; yoga class once per week; 15-30 min. yoga at home almost daily; choose to take the stairs in tall buildings (when I can find them).  He gave me a "good job"!!!  I didn't realize how much I was in need of this affirmation!  He said something like, "I like how much you're exercising."  Yay!  I figured it was good for my brain by promoting oxygenation, but it was still nice to have a medical professional endorse the exercise routine that you are undertaking when your brain feels like it weighs 40 pounds!  And on the bad days, I don't push it.  I listen to my body.

The other thing I'm trying is diet.  I have avoided the diet/homeopathy rabbit hole because the data just aren't there, and why give myself another source of stress.  But one place there seem to be data are on low sugar diets helping kids with epilepsy to have fewer seizures.  I'm being VERY non-scientific here, but I'm not a kid with epilepsy or even an adult with seizures, but cutting sugar isn't a hard thing!  And it's something I can do with relatively low-stress.  I talked to Dr. Oncologist about it at my last appointment about a month ago, and she was on board as long as I didn't cut all carbohydrates.  No ketogenic diet for me, just high protein and cut the processed sugars.  Clearly I still have lots of brain swelling so this is not a slam dunk solution, but it's something I can control and that feels good.  Also, avoiding processed sugar is a good thing for all sorts of reasons.  Oh, and I added fish to my diet.  Fish is high in omega 3's fatty acids, which are good for brain health.  So I'm now a pescatarian instead of a vegetarian, and I rather like it!  Fish is pretty tasty!