Have you ever had a dream about being exhausted? The past few nights, I’ve been dreaming about being tired. I dream I am in my car, driving back from Hopkins, barely able to keep my eyes open. In the dream, I feel almost drugged, and I imagine struggling to keep my eyes open while I swerve on the highway. I’ve even dreamed about pulling over to the side of the road take a nap, or dreamed about coming home to a quiet clean house and just…sleeping.
I’d like to tell you there is a deep message in my dreams, or to tie it to a beautiful story…but I think the only message is that I’m damn tired. In and of itself, that is fairly significant for me, because I rarely become truly exhausted. You see, I generally don’t sleep. I never have, so sleeping just isn’t something I look forward to doing. Yes, I did say I do not sleep. Whenever I tell people outside my family that I don’t sleep, I always get a very puzzled look in response, as if the statement must be incorrect.
I can honestly say I’ve never slept for eight consecutive hours, probably in my entire life. My mom tells me stories about how as an infant, I would stay up all night, babbling in my crib. Apparently, when I got bored of reading my books, I used to think it was fun to take my diaper off, but I believe that is another story entirely. I think I come by my insomnia trait naturally, since my great aunt Hilda never slept, either. A “good” night sleep for me is 4-5 hours, and a sleep marathon could be 6 or 7 hours with only one sleep interruption. I rarely have sleep marathons. I don’t sleep every single night, and I’ve actually been awake for more than a week at a time without even a nap.
Unlike people who are accustomed to sleeping, not sleeping doesn’t bother me. I fill my time with activities…knitting or crocheting projects, work, blogging…whatever my latest obsession. Sometimes, I just sit and catch up on the DVR.
I share all of this background to perhaps explain my new-found exhaustion. I actually do not think it is about lack of sleep…because even when I crash early, I still only sleep about 4 or 5 hours. Normally, I have vivid dreams, but I think I’m just emotionally exhausted, and that I keep dreaming about sleep because I just can’t process or feel any more, even in my dreams. Each day, I just look forward to a time when I can shut it all off again.
Funny, I never expected to come on here tonight (or this morning) and blog about sleeping. I intended to just give everyone that update about my mother they have been waiting to hear…she was finally feeling better today.
After finishing my blog post around 7:30 this morning (technically yesterday at this point), I cleaned up a few things then went upstairs to get MIcah out of his crib for the day (he was already thumping the wall and yelling for me) while Elliot and Maya kept sleeping. Micah was all smiles this morning, and we chatted and played while I made him pumpkin pancakes for breakfast. Much to my surprise, he even ate them! Megan arrived again at 9:00 and jumped right into the morning routine. She continued to watch Micah and help him finish his breakfast while I picked out his outfit for the day.
Micah turned 21 months old…and had his first day of preschool! I am amazed by how much he is growing each and every day. He is growing so big, and I think his language explosion is happening. He is still OBSESSED with Elmo (I think he asks to watch Elmo on tv about 100 times an hour). He knows most of his body parts, and he is pointing out letters and numbers. Lately, he has started singing, too. Elliot likes to sing a silly variation of the Hebrew song “Mayim” to Maya (I think the words go something like “You are Maya, you’re my girl, and I love you very much. Maya, Maya, Maya, Maya, hey Maya you’re my girl….”), and lately Micah joins in for all of the “Hey, hey, hey, hey” parts and he dances and claps, too. I love watching Micah participate. Micah is still a tiny little thing…only 23 lbs. We are slowly starting to work on potty training…just at his pace, no real rhyme or reason yet. He sits on the potty when he wants to sit on it or if he tells us he is peeing or needs to poop. His newest trick is taking his diaper off during the day and running around naked while I envision him soaking my house in urine. He likes to sit at the dining room table like a “big” boy, too, whenever we let him. So, happy 21 months, Micah!
After enjoying our pumpkin pancakes this morning, we kicked things into high gear. Elliot and Maya woke up a little after 9, and I raced around getting ready and nursing Maya before Elliot, Micah and I left for preschool. We arrived right on time, and Micah was able to meet his teacher, Lee, and a few of his classmates. He had a great time running around the classroom and climbing the jungle gym in the room. I think he is going to love preschool. We had one small mishap where he pushed another kid…I cannot wait until he outgrows this phase.
As we were getting ready to leave, I saw a baby doll on the ground and a toy stroller. I told Micah to pick up the baby doll and put it in the stroller. He immediately did, and he started to push the stroller around the classroom. He then headed straight for the door, and ran full speed ahead to the front of the building. We had to chase him and wrestle the baby doll stroller for him – he was hell bent on bringing that home with us! I think we need to go out and buy a baby doll and stroller for him sometime soon, because this is the second time he has tried to steal one.
After preschool, we came back home (well, Elliot detoured to vote). I nursed Maya and then Elliot and I took her with us to Hopkins (I stopped off to vote on the way out). When we arrived at the hospital, my mom was sitting and eating lunch with her nurse, Donna. Donna has been WONDERFUL to us, and we have been lucky that she has been stuck with us. My mom said she was feeling much better, and I was thrilled to hear it. I heard she did really well with her morning physical therapy and speech therapy, too.
My mom was still a bit uncomfortable, so we tried a new numbing jelly, which worked! Unfortunately, after lunch, my mom’s cramping returned. She was miserable for the next 2 hours again. My father arrived at the hospital during this time, too. The good news is, the discomfort was short-lived, and by 3:00, she was feeling great again. Hopefully, in the next day or two, my mom’s system will stabilize and she will have time to heal.
Right after my mom’s OT session, Elise (my mom’s friend’s daughter) stopped by for a quick “hello.” Jeremy arrived a little later, and we all had a chance to catch up a bit. Mom kept asking to see Delicious, so I brought Maya close to snuggle with her. The picture of the day is of Grammy and Delicious.
For those of you who have been asking, Mom is definitely in good spirits. She has been joking about this entire incident…says that there will soon be a headline in the newspaper that says “Woman Enters Hopkins for Brain Cancer Treatment and Dies of Constipation.” I am hopeful that today she will be past all of this trouble and feeling better and stronger.
This afternoon, I spoke to Dr. Holdhoff, mom’s medical oncologist. We talked about recent reports of a GBM vaccine that is being tested out in California. As I suspected, he told me that my mom was not eligible for that trial…or any medical trials at this point. In order to qualify for most medical trials, my mom would need to be ambulatory again – they rarely test new protocols once neurological damage occurs, but he will continue to look for options for us.
Lately, my mom has been obsessing about her radiological images. Shortly after my mom arrived at Hopkins, she went down for an MRI. I was not with her, but ever since then, she has been talking about these beautiful images she saw. I think she must have seen some bright and colorful photographic art work (maybe even with some fascinating radiation techniques…perhaps my brother and I need to go on a hike to figure out what she saw), but in the midst of all of this mess, she now remembers those images as images of her brain and the cancer. She likes to tell people that the tumor changes color with time, and that different parts of the tumor are different colors. She keeps asking me, the doctors, really everyone to get one of her images printed out for Jeremy, because she thinks it would be nice for him to have something beautiful from all of this ugliness, and she keeps thinking that his photographic eye would appreciate it most.
It finally occurred to me today that maybe we can give my mom what she wants. My brother is quite talented with photography and all of the different photo imaging programs, so I suggested to him that we get some of mom’s MRI images and see if he can work some photoshop magic and turn it into something brightly colored and beautiful. Jeremy was THRILLED with the idea – thought it would be a wonderful project. So, tonight he got a copy of one of my mom’s MRI scans, and he is going to try and make some beautiful art from it.
Elliot, Maya and I left the hospital today around 5, and Mom was doing really well. We heard she had a wonderful visit later in the evening with Suzette and Joel. We dined on a delicious dinner sent by my cousin Francine again. After dinner, I took Maya over to Beth El for Back to School night while Elliot entertained Micah and put him to bed. Back to School night…was kind of an annoying way to spend my evening. I did not find the presentations all that useful, and Maya was a bit fussy (I realized later that it was my fault…I forgot to give her Prevacid). It was nice to visit the classroom with the other parents and learn a bit more about the plans for the year.
Maya and I made it home a little after 9. She was awake for another hour (before we realized we had forgotten to give her Prevacid). She finally fell asleep, and Elliot and I watched a little tv. Micah woke up briefly at 10:30 or so…he was talking, and I started to laugh because I could see him on the video monitor pointing at the animals on his crib bumper while he was saying “eyes, nose, mouth” and touching the different body parts. Luckily, he fell back to sleep a little while later. I crashed for a few hours, and perhaps I’ll have a chance to nap for another hour or so before Micah wakes up again.
We’ll be headed back to the hospital again today. I am going to bring my computer with me and attempt to get a little work done while my mom naps. We’ll see if that works out! One of the best things about this process, however, has been all the time I’ve had to spend with Maya…and getting to see my mom with her, too. Maya has been amazing throughout this process. As I’ve had so much one-on-one time with her, I’ve been able to see her develop. She has become so social and smiley, and she loves to laugh. I cannot believe how alert she is, and it amazes me to watch her grow. So, I am trying to focus on those good moments with my children in the midst of all this…ugly. Perhaps these memories can do as my mother suggests, and turn something ugly and dark into something beautiful.