Still waiting for the final report from the Mayo Clinic

We're waiting on the input from the docs at the Mayo Clinic on the latest MRI. The radiologist in Omaha saw some significant swelling (almost assuredly necrosis continuing), but they mailed up the MRI scan films to Rochester to get their opinion.

Sometimes waiting in the hardest part.

Dad has been a little down, with anxiety and confusion adding to the problems. He's back to "thinking" that he heard something vs. it being actual truth. The sense of time is off (AM/PM), so it's a little challenging right now to keep spirits up until we get the final report. Anxiety is not something that Dad handles well, so upset stomach and headaches are showing up. Hopefully that all gets resolved when we hear the Neurologist reassure him (and us) that we just took out a large lobe of his brain, and it showed radiation damage. Everything I've read and heard or seen in the past few months has me convinced that we need to just get past this swelling and all will actually be just fine.

Convincing Dad of that is a bit harder.

He's been off the phone and the computer (mostly), so there is definite focus on getting his spirits back up and that this is necrosis working at him, and not a big, ugly tumor like he's thinking it is. Physical and Speech Therapy continue with regular visits, which is trying to hold on to muscle mass that the steroids are robbing him of -- steroids are really evil, but the alternative of not having them really isn't even an option. He needs them to keep the swelling at bay. It could be months before they're able to wean him off of them.

In the meantime, Tracy just let me know that they found Dad's sunglasses on the mantle at their house. They'd been missing for quite a while, so they decided that was reason enough to go out and get a TCBY with everyone in tow. Who can argue spending time with those four adorable grandkids, Tracy and Rich, Mom and frozen yogurt? Apparently not even Dad.

Call the house first - but if there's anyone that was looking to stop by and pay a quick visit (or a long one?), I think the company would help lift some spirits around the house. Convincing him that it takes a year to recover from the type of surgery he had, and that it was radiation necrosis and not tumor removed, is an uphill battle right now.

Strength in numbers!!

I'm off to water my plants - it's 105 in Portland today. Incredibly unusual. And this is day four of it. I want my 75 degrees and sunshine with low humidity back, please! :)

MRI and a few labs tomorrow

Well, things aren't as well as they were when Dad returned from the Mayo Clinic about five weeks ago. He's back to leaning a bit to the left, really fatigued (and sleeping quite a bit), and not quite the bundle of energy he was upon returning to Omaha.

The concern is that the necrosis is still very actively creating new swelling in areas that don't have a lot of "give" to allow for the swelling to spread out and let the brain breathe. The neurologist at the Mayo Clinic indicated that this is not entirely unusual, and that there will be ups and downs along the way until the necrosis has peaked (and that will happen). Without having my degree in Neurology, I'd predict an increase in steroids after the results of the MRI are back. The results will come back Thursday afternoon, and a meeting with the oncologist to talk about next steps.

Dad is still actively involved in PT and Speech Therapy, despite being really, really tired and not feeling up to it. It's important to keep that up, however, as the first 60-90 days after surgery offer the best chance for recovery of anything that may have been lost.

We sure missed Mom and Dad in Portland the last five days. Grandma and Tracy and baby Kaitlyn took a flight out here to meet me and Uncle Mike (who drove up from Redding, CA) for probably the best five days I've had in a long time. Lots of laughs, great scenery, and of course some good food. Next time, Mom and Dad are coming out!!

Steroids causing a few unwanted side effects. . .

I feel a little guilty. It's been nearly three weeks since my last post. It's not that I haven't been thinking of you all; it's just been a bit busy back to "normal" life. As I'm sure you can all relate, I've had a big box of things to go through next to my desk. . .since October. That got done today. Why now? Grandma is coming to Portland this week. I want the best possible impression for her, as I'd love to have her come back often. She's flying out Thursday with Tracy and little Kaitlyn. Auntie Mary is beyond excited for the visit. My house hasn't seen the likes of a cleaning effort like this in, well, years.

So back to Dad. . .

He's doing "okay." We're back into the wondering what's going on - is it new medications? Additional necrosis/swelling? Weaning off of the steroids causing problems? Lack of solid sleep since mid-June finally catching up? Not sure. Dad had a good couple of weeks upon the return from the Mayo Clinic. Incredibly energetic, starting back up with physical therapy and speech therapy to continue working on the progress made in Minnesota. The problem? He slept about three hours at a time, no matter what time of day/night. Lots of activity for him - up in the middle of the night having a snack, checking emails/news, etc. Not exactly restful.

After hitting several of the undesirable side effects of the high dose of steroids, the doctors dropped him down pretty aggressively. This has resulted (we think) in once again extreme fatigue, bad headaches, and a bit of a "fog" as he's walking around. So they increased the steroids back up yesterday (to 12mg/day from the 8mg/day dose early this week). Hopefully this will reduce the swelling and give him some relief. Poor guy. He was on top of the world, considering himself to be the luckiest guy on the planet. He's gone from doing "GREAT!" to what he calls, "Good."

There's every reason to believe that the increase in the steroids will help him with the latest symptoms, but hopefully it doesn't rear the irritability and lack of solid sleep again.

Mom is thinking that if there is a day that Dad is up to it, having friends come over and take Dad out for a convertible ride (in the VW Beetle), out to lunch, or out to coffee would be great. Call the house first, but assuming the headaches and fatigue get better within a few days, he'll be ready.

Hope you all had a fantastic 4th of July, and are enjoying the summer months.