3.10.11

ROSS:

This will be a brief post because I'm waking up very early tomorrow morning. Today was our meeting with the Gastroenterologist and our Oncologist. Both recommend that mom stays off a feeding tube. The risk is just too high for what little rewards it could provide, if any. So mom is going to really focus on eating well. She has been doing a pretty good job lately. Hopefully her weight can stabilize before we start the next round of chemo, which we will start either the week after Aynsley's wedding or the first week of April.

It's crunch time for me in school. I will have to be studying almost the entire weekend. But after Wednesday, I will have a full 10 days to spend as much time at KGH as possible. I can't wait. Spirits are still high and mom is as sweet as ever.

3.9.11

AYNSLEY:
The views of Mom's room.

In the left corner of the bottom photo, you may notice a large blue thing hanging from the ceiling. That's an enormous crane, made from wrapping paper by my cousin. The colorful artwork in the center of the wall was done by Gary's godson and his two adorable brothers-they not only colored it, but they punched little holes alongside the pictures and their names so Mom could feel them.

Cranes hang from every available surface, and if the surface isn't too available, we improvise (duct tape, anyone?). Every time anyone walks in here for the first time, or after a break, they always comment on how beautiful it is, how everything is so colorful. They always ask who made the cranes. I'm so glad we have them all up and that the room is festive, colorful and full of good wishes. But it's also hard that Mom can't see them. Every time someone comments, I know she feels the sting of not being able to see them, to enjoy the things that bring her pleasure.

I didn't stay over last night even though it was my turn because I had an early work call this morning. And of course the night was rough: Mom had stomach cramps and pain a lot through the night. She didn't take her daily does of morphine because she was uncomfortable, and then felt the morphine missing around 1am. So, now we know, the decrease in dosage was good, but she needs it every 24 hours. When I arrived later this morning, all of that was behind her and she was about to start another intense PT session. Today she did a lot of sitting to standing transitions. They are SO smooth and strong! She must have done 10 of them and each one was perfect and unassisted. It's so great to watch her do functional exercises that will get her on the path to autonomy. She was energetic all day until the tail end of OT. She typically has PT around 10:30am and OT around 3pm. Around 3:30, after stretching her calves, she literally sat down on the bed, pulled her feet up and fell asleep. I've never seen anything like it, but she quite literally fell asleep.

I'm staying over tonight, one last girl's night before I go back to New York.

3.8.11

AYNSLEY:
Bath day! At KGH, bath/shower day is once a week and done with an aide. I drive them crazy, always butting in: draping Mom with dry towels during the shower to make sure she doesn't get cold, washing her hair while the aide is washing her feet, bringing in Aveda cleanser...Today I brought her loofah from home; her skin is very dry and flaky, and I wanted to slough some off. I'm sure the staff is counting the days until I go home (for the record, 2) and they can go back to doing things the way they're comfortable doing it. But in my defense, the one shower Mom had at the hospital when I wasn't there was horrible-she was freezing. So bad that it took me two weeks of convincing her that I would keep her warm if she let me do it before she agreed to take another one. So I make it my business to constantly ask if she's warm and bring in extra towels. I know I'm annoying and I don't really care.

The shower was the big morning activity. She also had another strong PT session, using 2 pound ankle weights as she did leg extensions and hip adductions from bed. After a strong nap and a great lunch, she was in the mood to listen to music and catch up with her friends. She sent texts to friends she hadn't seen in awhile and called a friend from work. She called her coworker to get another former coworker's address (who sent a gorgeous and delicious fruit basket), but when all of her colleagues heard that she was on the phone, it got passed around. Seeing her light up when she talked to everyone was wonderful. You forget how much of an impact the people you work with make: Mom used to work 10 hour days, she spent a lot of time with these people. I know she's missing her former life, the sense of purpose that going to work gives you, the reward of the weekend, the routines. I was thrilled that she got to talk to everyone, it really made her day.

Something work related that I haven't mentioned: her boss dropped by last weekend with an amazing gift. On September 11, Mom and a team from Eddie Bauer completed a 60 mile bike ride to raise money for MS. Her boss matted and framed two photos from the race: one of Mom peaking a hill, with a huge grin on her face, and one of the whole team. She also included a group photo from a hike that EB did last spring. Around the matting, many of her coworkers wrote her messages. It's gorgeous, and full of energy and strength. I love looking at it and having it in her room.

In the afternoon, we went outside. The forecast said clouds and rain, but the day disagreed and sun shone through the windows onto Mom's arms. She felt it, and we decided to get a bit of fresh air. Since it was still cold, we didn't stay out for long, but I think just getting in a few moments of unrecycled air is a healing thing. She then had a fabulous occupational therapy session with weighted bars and balls. She is so significantly stronger than she has been; it's so wonderful to watch the progress. I'm really excited for her oldest friend (in length, not age) to come back in couple of weeks and see the progress-it's astounding and very heart warming.

Tomorrow is my last night spending the night with her for a couple of weeks. I go home on Thursday for about ten days, then come back to get married. Mom is finally getting excited about the wedding, which is excellent: the whole point of moving it up and having it at KGH is so that she can enjoy it.

3.7.11

AYNSLEY:
The streak continues! We had more disruptions last night than we've had in the last week or so; I was almost getting used to sleeping well with Mom. Nothing serious, just some bathroom breaks and a blood draw at 5am.

Universally, blood is drawn before the crack of dawn. The vampires always peek in the rooms between 4 and 5am, apparently to get samples off to the labs before the doctors begin their rounds. Today was a draw to see the infection's progress (or hopefully, lack thereof). There will be another blood draw on Wednesday morning, just to make sure that the infection is gone for good. I'm still a little concerned about that fever from Saturday, but it seems to be gone, so I should really stop worrying about it. There are enough real things to worry about.

In spite of fragmented sleep, Mom was upbeat, alert and strong today. Her appetite has been great the past two days and today she ate about 80% of her lunch: lamb stew. I am beyond excited that she ate and enjoyed the lamb. It seems like the perfect meal for her right now. She's about 93 pounds and always cold (today wearing a fleece hat and fleece jacket in bed with two blankets on and we have the heat way up!!), so lamb stew just seemed so nourishing and rich and warming to me. She must have agreed, because she was way into it. For a snack, she devoured half a large orange. And some grapes.

Physical therapy today was similar to yesterday: walking to the gym to ride the bike, then exercises in her room. She's visibly stronger the past couple of days, getting herself up and down from bed, standing with more stability. Last Friday, I noticed that her left foot was externally rotated while she was walking. In essence, her feet were making a wide V. I'd never seen Mom do that before and I mentioned it to the PT. She told us that it's a way to gain more stability and that our bodies will do that when we're off balance. So, Friday she was feeling so off balance that her legs were repositioning themselves to give her more stability. And today, she was plowing down the hall, lifting her legs up high with each step and both feet pointed firmly forward.

She also got weighed today, a process that involves standing on her own, on an uneven surface (the scale), while holding a very narrow bar in front of her (not at all like the stable position of a walker). She was weighed last week and shook the entire time; I basically held her upright from the hips. Today she didn't need any help-I kept my hands hovering around her waist, ready to spot her, but she didn't need any help.

The other bright spot that I haven't been mentioning because I haven't wanted to jinx it is her vision. There is progress there. A couple of days ago, I was holding a cup of water for her, getting ready to hand it to her and she grabbed it exactly where it was. When I asked if she saw it, she said she saw the shadows. Yesterday while in bed, a beam of sunshine landed directly on her face and she said "is there sunlight on my left eye?" Indeed there was. She could see it. And today, while Dad was kneeling in front of her, she saw his face. She couldn't make out any specific features, but she reached out and touched him exactly where she meant to. Beautiful.

All in all, things to celebrate. Here's hoping the infections are long gone, that the shadowy vision continues to narrow and focus and make way for sight and that the weak days are behind her.

3.6.11

AYNSLEY:
Today was as good as yesterday was bad. When I arrived at KGH at 10am (with triple shot nonfat vanilla latte and reduced fat cinnamon swirl coffee cake for Dad), Mom was alert and chatty. About 30 minutes after my arrival, the physical therapist arrived and Mom had her most intense session to date: squats, calf raises, high knee marches (where she lifts her legs up as high as possible, usually about half an inch off the ground), then a walk down the hallway to the gym, where she rode the bike for 10 minutes, then walking back to her room, then another round of squats, calf raises and high knee marching. The therapist capped it all off with some nice stretches and a bit of massage. All in all, about a 45 minute workout.

Later in the afternoon, Mom told Ross that she visualized riding along Lake Washington Blvd as she was riding the bike.

When she was finished with PT, she got back in bed to relax for a few minutes before lunch was served. She ate the largest portion I've seen her eat since diagnosis. Lunch was fried chicken, mashed potatoes and corn; Gary was jealous. Mom ate 90% of her chicken. I have NEVER seen her eat more than half of anything on her tray, and half a portion is a big deal. Eating so much was awesome. She also had a good amount of corn and potatoes. The she had some bagel, cream cheese and lox for an afternoon snack, then bites here and there of dinner: some of my salad, some of Dad's pizza, a bite of the blintzes that were provided...

Seattle weather was beautiful today: clear, crisp and glimpses of the sun. I got in my first run of this trip this morning before I came in and Mom got a little fresh air. We bundled her up in her Sisterhood of the Traveling Wool blanket, my mother-in-law-to-be's shawl and another healing shawl that was knitted for her and went out to a little courtyard. Despite all the layers, Mom was cold, so we did a quick lap, then came inside. Still, I have no doubt that the fresh air is healing.

Finally, a nap around 3pm.

The rest of the evening Mom was alert and pain-free. Dad and Ross left around 7:30, leaving us to another girl's night slumber party. We did some hip opening and hamstring stretches, listened to her book club book and talked more wedding details. She teased me a lot. I deserve it.

3.5.11

AYNSLEY:
I'm not gonna lie, today was rough. Mom was awake and alert in very small batches today. She slept well, waking at 1:30, then not again until 7am, when she ate a meager breakfast and fell back to sleep. Around 9:30am, she woke up again, ate two more bites of breakfast and napped again. She was up from 11:30-12:30, when she ate about half a cracker with brie and a bite of bagel and lox, then back to sleep again for the rest of the day, only getting up to go to the bathroom, until I left the home at 6pm. She's also running a low grade fever: 99 point something; they gave her two Tylenol and it dropped, but that scares me. Tomorrow is her last day on antibiotics, so the infections should be gone. They will take blood samples on Wednesday and on Friday to make triple sure everything is cleared up, then discuss when chemo will begin again.

If the infection is gone, why does she have a fever?

Chemo is contingent on the infections clearing up: they won't start it again until all of her blood counts are exactly where they need to be. So we're already two weeks behind in treatment; not sure how much of an impact that will have. The other confounding factor is the wedding; the oncologist may want to wait until after the wedding to start chemo up again-it's risky to have her blood counts drop (as they will on chemo) and then be around so many people. Plus, she'll feel like crap, which isn't the way you want to spend your daughter's wedding. Still, I wonder if that's such a good idea. Mom was responding so well. Granted, the infection is something that's non-negotiable, but using the wedding as a stall...that seems like a gamble to take. My parents are meeting with the oncologist this Thursday and will surely get more information then.

The nausea has subsided. So, though Mom was extremely fatigued today, she wasn't nauseous. Count that in the positives.

To be perfectly honest, this trip has been difficult for me. I'm the most fragmented than I've been since this all began: trying to get things done for the wedding, trying to finish work projects (tonight I finally completed a curriculum that I've been trying to write all week tonight-hence leaving at 6), trying to stay overnight as often as Dad will let me...it's exhausting. Everyone is exhausted. If I hadn't made a commitment to blog every day, I wouldn't have written at all this past week. The wedding will be over soon, which will be a relief. A happy relief to be married to Gary and also a relief to be able to focus more completely on Mom and the rest of my family (Gary included).

3.4.11

AYNSLEY:

I've developed my own method of medical explaining. I've decided that the recent bouts of nausea are a result of morphine withdrawal-in the last few days, Mom has cut her morphine intake by 50%. Huge when you consider that for over two months, she was on a LOT of it. The great news, of course, is that she isn't in any more pain than she was with the higher doses of morphine, so tapering off is great. Today was the least nauseous day-only a few minutes towards the end of the night as she was taking her last pills. But she told me she really wanted to keep them down, so she did.

I've also decided that the morphine leaving her system has alleviated a lot of the stomach problems it was (may have been) causing, so she'll be able to take fewer pills in the long run. Pills are by far the hardest thing to swallow, literally and figuratively. When she finds out she has more pills than she thought, the disappointment is obvious and heartbreaking. The only time I've heard anything close to a whine was one night when a nurse brought them in after I told her I thought she was done. So less is fabulous.

Eating continues to be a struggle. We hit meal jackpot #1 yesterday with corned beef, today we hit it again with manicotti. Manicotti used to be what Mom made for company. She would cook the pasta tubes and after they cooled, we would stuff them with a ricotta based stuffing that was delicious. I have very fond memories of sitting at the kitchen table, stuffing pasta with special long narrow spoons, and just being together, looking forward to spending time with each other and the company we were entertaining. Today's serving was two pieces and she ate all of one and a few bites of the other. Great for her, but still a small portion in the grand scheme of things.

She lost another pound this week; the term wasting constantly floats around my head.

Next Thursday is the appointment with the gastroenterologist. I will be on an airplane headed back to NY at the time. It's sort of poignant-it's the one time that I can not be involved and it's an appointment that I so want to be involved in. I considered changing my flight to a day later or a day earlier so at least I could be on the phone, but stopped myself. There are things I'm going to miss. I need to get used to that now and trust that everyone is 100% capable of making decisions without me.