Wheel Spinning

Yesterday afternoon was pretty frustrating for Meagan. She attempted to get into her studio and finish up arranging it, as well as tackling a few small projects. Unfortunately, her short term memory was shot yesterday, and what should have taken only an hour or so, ended up taking up the full afternoon. She simply could not remember even what she wanted to do within a five minute span. The good news is she got it done. But not without tears, frustration, and a lot of swearing.

It's hard to know what is driving this - it could be the effects of the craniotomy, the radiation, or the medications. It does seem to vary somewhat from day to day, which would lead me to think it's more the medications and how it ties to how tired she is or some other aspect of her body. But it could very well that the short term effects are becoming more long term than short term. There is no question some aspects of her cognitive capability are gone "forever"- such as her facility with numbers and dates. But the short term memory thing seems to be more "assertive" and whether it will resolve in time remains to be seen. She goes off one of the anti-seizure medications this week and we will see if that makes a difference.

It definitely causes her distress, given how sharp she used to be. She asked me several times yesterday if she was losing her mind. I've tried to reassure her that it is likely short-term and temporary, and to just relax about it. There is always the worry that it is not an aspect of her prior brain injuries, but indicative of developing brain tumor activity. I'd rather not go there speculatively, we will know that by the 3rd of August.

She is using all the tactics one should to keep her on track - such as lists and calendar management and a white board for planning. My reassurances though ring a little hollow to her, and I suppose it is just a condition she has to get confortable with as best she can. It doesn't affect her ability to interact with people and whenever she can't recall something in conversation she is able to make light of it. But in private when she is on point and trying to get something done, it's a problem she recognizes, without a known resolution. And there is nothing much that can be done about it other than acceptance.

The Calm before...

Meagan is doing really well at home recovering from the stroke. She actually had fun with her speech therapist yesterday (who works on cognitive issues as well). Probably because we discussed focusing on the things that matter most to her right now - which is all about connecting with friends. So she is practicing typing with the goal of getting back on Facebook. She has enjoyed our new schedule - can't get started too early (nothing before 10:00am) - with then either doctor visits or home therapy and then visits with friends and family. She worries a lot about me, especially when she realized she won't drive again, because she doesn't want to be a burden, but I assured her we can make any appointment happen and me driving her or she walking as far as University Village were all doable.

We see Dr. Kaplan today to discuss next steps and get a sodium check. Most important in the short term is brain radiation. I've been reading up a lot on it. They have lots of options for narrow focused radiation beam treatments. She will have to get an MRI with contrast so they can pinpoint where the remaining cancer cells and other tumor is located. But malignant brain tumors are tough beasts. Melanoma in particular can be radiation resistant. And it's almost impossible to get every cell, meaning regrowth is highly probable. Whole brain radiation is also possible, but the side effects are undesirable. So it's a tough problem, with no great answer. In the meantime her melanoma is unchecked. Somehow we have to get tumors removed as much as possible, get the brain swelling down post radiation with no new tumors emerging, so we can have a shot at Interleukin-2 - the last remaining systemic therapy that has a chance at shutting down the disease. Apparently we can't do the IL-2 until the brain inflammation is down, so that the IL-2 doesn't confuse inflamed brain tissue with the cancer.

Thankfully she is in a positive frame of mind, anxiety free and focused on her friend and the goodness around her. One of the beneficial side effects of a brain insult and surgery. But for those of us who haven't had that "happy pill", the road ahead looks daunting.

Rhythm Being Estabished

Things seem to be settling into some sort of rhythm and Meagan is improving steadily. Her speech is back to normal. Last night she ventured onto the computer to finish a movie. She then went to her email and with a little help from Casey and me was able to start deleting junk mail. Took a bit of repetition and reminder but she did it. She is moving around the house confidently and handling her own dressing and self-care. She walked around the block again yesterday and did some yoga with the occupational therapist.

Corn Flakes

The body and brain and are mysteries. I feel like a detective, trying to assess Meagan's physical and mental condition and adjust each day to suit her capacities and inclinations. Yesterday (Wednesday the 27th) was a pretty good day for her. By the end of the day I thought the right balance had been struck between rest, rehab, and relationships. She was able to get some stimulation and work parts of her body and yet also enjoy some times with family and friends. And funny enough, her body continues to crave and demand certain things as it attempts to resume control over her sodium levels. So Ritz crackers remain high on the list - munching quite happily 3-5 with each "feeding" as I term it of her pills.

Rehab Day One

How can you not love a woman, whose final words falling back into bed after being awakened at 6:00am to swallow 3 sodium pills washed down by 2 Ritz crackers and milk were, "life is good". 

Notwithstanding the frustrations and exhaustion that came from rehab sessions yesterday, she remains upbeat and positive. Those sessions drain her. Seeing people gives her energy. I can do the math. We will be adjusting her rehab sessions so she gets rest and/or naps in between. She's also ready to see more people. Her language skills are back to where they were before. She is moving around the house confidently and handling her own care. She still needs me to tell her schedules and such, the numbers part of things and organization part of things aren't there, although she doesn't much care. The keyboard is still a huge challenge, so that won't be a part of her life for some time. She is quickly adapting to her visual field issues, and is unconcerned about her inability to drive.

She dropped at least 8 pounds in the hospital - we've got her back up about 3 - but 5 to go to get back to her usual weight and we need another 5 on her to get her ready for future treatments. So abhorrent as it is for those of us who read The Omnivores Dilemma and Fast Food Nation, yesterday she had a Big Mac and fries. Plus an Odwalla protein shake I laced with a large scoop of Haagenn Dazs vanilla ice cream. Casey is all over her about how to ingest the right kind of foods to bulk her up, even though he and I are on more heart healthy food programs.

She also thanks everyone for the cards - it's a great way for her to practice reading.