Let Part Two begin. Part One has been so much more unbelievably successful than any of us could have expected, we’re hoping it’s not an act of foolish hubris to keep going in that vein. However, since we’re basically optimistic people, and we choose happiness whenever we can, that’s our current path and plan. I hope each and every one of you knows how very fundamental your good wishes, love and comments are to helping me and us through this strange odyssey. A brain tumor?!
Coming home was wonderful. Resting in my own bed when we got home from the hospital was comforting beyond words. I got an hour of the calmest, most healing sleep I’ve had since that first telephone call saying that there was “a mass” that needed to come out, and there was no rush—any time in the next week would do.
Once we got through all the discharge formalities at the hospital, Michael and I drove through Crystal Lake Park and sat and looked at the lake for a while as we tried to process where we are and what’s going on in our lives. Or, more the way it feels, what’s overtaken us. We needed the little bit of beauty and peace. Also, Kearney has taken over temporarily helping Shea with college stuff and the two of them had an informational meeting at our house to attend; we wanted to give them room to get in their groove together and own the task without us hovering. They, of course, did splendidly and rose to the occasion with calm competence. I’m trying not to feel like a deficient mother and mostly succeeding because there are so many other deficiencies to focus on, too.
For example, we changed the sheets on the bed this morning to set the stage for how really calm and low-key and recovering I’m going to be. When I went to get a set of sheets to put on the bed, I found myself standing in front of the cupboard for about three minutes trying to match the sheet with a duvet cover. I got the bottom sheet and pillow cases right away and then was completely befuddled. And weeping. Michael came to the rescue and assured me that I’d finally settled on the matching piece and that I have, even in the past when we didn’t know about tumors, had trouble when tired with this processing, so we laughed about it and went on. The clean sheets are on the bed and that’s behind us. They match. [Michael note: it is the duvet that “goes with” the sheets; they are not matching in the sense of the same fabric. T was being a bit hard on herself.]
We’ve set our goals for the day: resting. At some point, Michael is going to take some wet cotton balls and try to clean up the dried blood caked throughout my hair (I sprinkle dark red dandruff pretty constantly right now). He continues to be extraordinarily admiring of the craftsmanship of the staples installation: he says the placement is beautiful and done with extreme attention. Not only are the staples securely placed, they are even and precise. [Michael note: There are about 100 staples. Of those, a couple are a little crooked, there is one small “dimple” of skin between 2 staples, and 1 staple has a few strands of hair caught in it. Otherwise, the line is nearly perfect, and if you know T’s hair, that is amazing.] They send a clear message that the surgeon who placed them was paying attention to every detail. It’s a nice extra reinforcement about what very good medical hands we’ve been in. The suture line cannot get wet, so I cannot wash my hair until the staples come out, but we’d like to do what we can to take some of the itchy stuff away. It seems like a good goal and will be nice to achieve. (And let us count blessings that I still have some hair to worry about washing instead of a shaved head.)
If we get really wild and crazy, and the energy seems to be holding out, I may try to get clean, too. I took a shower in the hospital that last day, which felt spectacular, but once I got my glasses off, couldn’t see what I’m told was very light pink soap coming out of the dispenser. Kearney assured me there was soap and it was getting on me. However, since I never did perceive the soap, while the water felt great, I never really got that “clean” feeling. Interesting how much of that feeling, at least that day, seemed to be visual as well as sensory.
There have been a lot of odd sensations. We’re curious to see if they’re morphine-induced or shifting brain tissue, or some combination. Falling asleep for one of the naps Kearney and I took in the hospital yesterday, I was getting powerful visual images of how I should be lying for this nap (not the way I was lying at all) and the sense that it was mandatory that I move to achieve that position. Since it wasn’t a possible thing for me to do all tethered up, it was a set of fairly strange minutes while I struggled to reconcile completely incompatible imperatives.
Otherwise, I get odd images and words that come to mind and drift around and then go away. I hear people say things they haven’t said. Everyone’s being kind with me about this, and we’re mostly saying “how odd” and going about our business, waiting to see how this develops over time. No startling insights yet, though we can always hope.
We’re trying to make sure we have the schedule for medications down and are following it properly. Kearney went through all the information yesterday and built a calendar, and then laid out all the pills for through the night. Now that we’re all less exhausted, we’ll take another look and see if there are ways to adapt it to simplify it. Other than pain control, it’s steroids to keep swelling down and dilantin to prevent seizures. There’s an antacid to keep the steroids from upsetting the stomach. We’re putting ointment on the incision and taking benadryl for congestion. I’m probably missing something.
Oh yes, today also brings shoulder and arm therapy several times. We have come to believe I must have injured my right shoulder sleeping that first night in the ICU and that there are also brain pressure effects going on. It’s better than it was, but doesn’t work properly and has areas that feel sort of dead. However, the control is better than it was, so we’re focusing on the improvement and will do the work and see where it takes us.
As we opened mail and cards today, we were all struck again by how very fortunate we are to know the people we do. You are thoughtful, kind, funny, loving and are passing us strength when we run short. We are lucky to know all of you. One package today has a CD with videos of a friend singing healing songs. His note says “at the moment, I’m thinking the only measure of true love is whether you’re willing to be embarrassed for someone.” True love, you’re out there, and we recognize you.
I feel lucky. I feel overwhelmed. I feel broken. Most of all, though, I feel loved. I thank you from the bottom of my heart for your friendship and caring and support. Reading (or being read) your messages and emails has carried me through some scary moments. There will be more to come, and we know we’ll be able to address each and every one because you are all out there behind us and pulling for us on this strange, strange path we’re on. Thank you.