Sunday, August 21, 2011


Everyone knows how Meagan is very much a social creature, who thrives on contact and connection with people - biological family, created family, and friends. It really defines her. She also does not want to hurt people's feelings - she is quite sensitive to that. Even in her best days she was constantly fretting about that - managing her calendar so that she could see the people she wanted and needed to. She would talk about the need to create time for herself to work on her Milton project (illuminating "Paradise Lost") and it was always a struggle to get enough time to do that and meet her social obligations (which were visits with people). Fortunately she had email and Facebook, and in the mornings and evenings she could catch up with people even if she couldn't see them in person.

Well, those days are long gone. First of course, she can't work on her Milton project - which is really frustrating. She has a hard time just writing out notes and letters. Although she has pushed herself back into her studio to try to write some letters I often find her in tears because her penmanship is not what it was, and in fact it is quite sloppy and there are lots of mistakes. That violates her sense of beauty and validates the changes in her. There is quite a slip between the cup and the lip as it were. (Note: Today we are going to get some wide ruled note paper as she seems to be able to stay between the lines better that way). It also takes her a very long time to write a short letter - not in the Mark Twain sense - but it is slow and laborious. So any note and letter anyone receives is filled with sweat and tears, a true labor of love.

Second, she simply cannot process or use email and Facebook the way she once could. She can't follow the train of thought while she reads as well and her eyesight changed as a result of the stroke so it's harder to read (being addressed). She can't keep up on messages, gets confused about what she has or has not responded to, and it takes her quite a long time to type a response. Her visual field deficit affects her typing ability, so it is a mistake laden process - and as a result she doesn't hardly use Facebook at all and only types a few responses. So that reduces the contact she has with people, to her regret. That then increases her guilt factor, which I have to try to allay.

Third, she is very confused about dates and times. She is trying to use a white board on the table next to where she sits to track her appointments and schedule things. She wants to try to schedule a few things each week, and leave some down time for herself. It is important to her that she take as much responsibility as she can (for her own sense of self, identity and independence). It was pretty successful for a while, but then the Gamma Knife brain radiation treatment happened and her mental abilities went downhill - hopefully temporary - but nonetheless she isn't as able to keep track and plan as she once did. It was and is very difficult to plan ahead for anything given the whirlwind of activity we've had in August:

August 1 - brain MRI
August 3 - meeting with Dr. Kaplan - discovery of 2-5 brain tumors
August 4 - meeting with Dr. Vermeulen (radiologist) to discuss treatment plan
August 10 - meeting with Dr. Kaplan about pain in her tailbone. Eye doctor appointment.
August 11 - CT scan of body. Preliminary results from Kaplan - spinal tumors identified
August 12 - Gamma knife brain radiation treatment - two tumors addressed plus a bit of mop up on former site
August 15 - Bone scan of body
August 16 - meeting with Dr. Kaplan - discuss treatment options, referred to Dr. Vermeulen
August 17 - 3 1/2 hour body MRI
August 18 - talk with Dr. Vermeulen - 12 spinal tumors identified - referred to Swedish Ballard. Talk to Dr. Landis's office and set appointment for Tomo Therapy planning.
August 22 - appointment with Dr. Landis. Appointment with eye doctor - get new glasses.

So during this period we found out she had two brain tumors and had them treated and discovered she had 12 spinal tumors and have arranged treatment for those (remember - this is after being told by Kaplan on the 11th they were essentially untreatable and then on the 16th that they might possibly be treated in 2-3 months). The emotional swings have been incredible. Plus her tailbone hurts. And from the 13th on (day after her Gamma knife treatment) she has been fuzzy and had a hard time thinking (side effects). Much of her "free time" during this timeframe was simply being in shock and trying to process what was happening - and obviously in no condition to receive visitors.

We have also discovered that she has a hard time getting going in the morning. She needs time to orient herself, and have some clearer thinking time before her medications are administered. Being rushed or pressured is distressing. It also takes her a long time to get ready. So we are pushing it if something is scheduled by 9:30, 11:00 is much better.

Lastly, she has just needed quiet downtime - unconstructed time to ponder, read or walk. The weekends have typically been that refuge time. It is restorative and enables her to mentally and emotionally meet the week ahead, which she usually knows is going to be filled with doctor appointments, scans or treatments. For example, this week she starts off with her fitting for her new eyeglasses and then the planning appointment with Dr. Landis. But after that we have have no idea what the treatment plan is going to be and when it starts - so it's impossible to commit to other things. That is stressful given what she wants to do in terms of seeing people.

All this is noted so that people understand what she is going through and how it affects her ability to see or communicate with her loved ones. It's a challenge for me just keeping her on track with her medical appointments and getting her ready in time. I also have to provide the emotional support when her personal needs supersede her perception of how she should be spending her time or when there is a conflict between her personal needs and those of others. But right now, her needs are paramount. I cannot imagine  - even though I have been through it with her - how she truly has felt over the various discoveries and insults to her brain and the fear she must have over the possible courses this could take. I do know how much time I spend consoling her when she is wracked with emotion and crying. So I respect her need to create some time and space for herself to just be, and recover whatever sense of "center" she can to meet the challenges ahead.

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