2.13.11

AYNSLEY:

Mom sounded great today! She ate well, wasn't sick, had lots of energy and entertained lots of visitors. One of her friends brought by more cranes today-we've been receiving them for over a month now and some people have gotten very creative. I'm not sure how well the photo on the bottom shows them off, but those are crane flowers in the middle and look beautiful. The photo on the top is the wall behind her bed-there are tons of cranes creating a backdrop (and the awesome scarf that's hanging to the far left is handmade by my future mother in law-so pretty!). As you can see, her room is a virtual cocoon of healing wishes. She is so enveloped in love, prayers and goodwill.

The best part of the day was just talking with her about normal stuff. I used to have the habit of calling her anytime I was walking for more than 10 minutes, just to fill her in on the day, and more recently, talk wedding shop. Since she's been sick, this obviously hasn't been happening. On the one hand, half of the time I'm physically with her, so I don't need to call. On the other hand, now when I'm walking to the subway, or just taking a walk on a break from work, I miss her bitterly. But today she asked me what I was working on. So I told her about a grant I had received to run a new fitness program at the Y and how I've been working on a lot of home study and how it's a really amazing exercise program (if you're interested, check out fitnessanywhere.com), I told her about acupuncture, I told her I still haven't found a wedding dress, I told her about the enormous roach in our apartment and how I wasn't sure who screeched louder: me or Gary. (Ok, for the record, I screamed louder. I tried to smash it with a shoe, but the first one I grabbed was Gary's dress shoe and he wouldn't let me kill it with that. So I used one of his sneakers, and he grabbed my hockey stick-not sure which one of us finished the roach off, but I wouldn't touch the corpse, so Gary threw it out. I like that we both used weaponry that belonged to the other person. Gearing up for married life, I guess.)

I have been so thankful for all of the generous notes, emails, texts and blog posts: so many people have responded to my worries with real words of wisdom and love. And good things to keep in mind. For all of you who have thanked Ross and me for the blog...you have no idea. Thank YOU for reading, for keeping us in your hearts and Mom in your prayers. For keeping Dad fed, keeping Mom company, making the room beautiful and keeping me (relatively) sane.

2.12.11

AYNSLEY:
There are times when Mom gets confused and I don't understand it. Since getting sick, she hasn't been able to recall the year. When asked, she'll always begin "19..." then pause, and sort of laugh at herself before realizing we're in the 2000's. But then she won't be able to find 2011. She knows the days of the week and the month, but not the year. Very odd. And tonight she couldn't remember plans that we had gone over a couple of times. I don't know if it was because we were talking about things right after she woke up or if there is something going on in the timing region of her brain that is interfering with those kinds of things. But it's something and it worries me.

Though everything worries me. I worry when she doesn't eat enough, I worry when she doesn't rest enough and then I worry if she sleeps too much. I guess I'm just programmed to someday be a Jewish mother (even if I don't have kids, the obsessive worrying is still in my DNA). Mom told me that she ate well today: a friend brought over scrumptious things in the afternoon, so despite a modest breakfast, she got some good calories in her. When I asked how her stomach was feeling, though, she admitted that she wanted a break and didn't have an appetite for dinner. I think she's constantly less comfortable than she lets on and maybe that also alters her focus. I know if I'm in pain, specifics can become hazy. And it's got to be old by now-every day seeming the same, the only way to mark time passing is really by who's with her when, what food is being served and various therapies.

When we moved to the KGH, I admitted that I missed the hospital. Gary suspected that I missed the energy of the hospital more than the actual hospital, which is interesting. On a basic level, the hospital was high energy, emergency response, adrenaline-fueled. KGH is much more relaxed, slower paced, sustainable energy. If we can compare them to cities, the hospital was like New York and KGH is like Seattle. No wonder I felt more comfortable in the hospital. And we also were in phase one, with a phase two plan. Now, living in phase two, a phase three plan doesn't exist yet-who knows where Mom will be in a month, physically, emotionally or health-wise. There's no specific set goal that she's working towards. Everything is abstract: get better. But without specific, measurable outcome goals to achieve, it's impossible to tell when you're making progress.

So we're in limbo.

Strength and balance have much improved. So have appetite and stomach discomfort. But with round two of chemo beginning the day after tomorrow, who knows how long that will last. And if/when there are setbacks, how discouraged does it make sense to get? And, of course, the real concern is how the chemo is working. In about three weeks, we'll be able to take a look at where the cancer is now, how it's responding to treatment and if the chemo is worth it.

2.11.11

AYNSLEY:
Mom continues to kick ass in PT and OT. And today, in eating! YAY! I got several reports today of how much she ate, which has been so good to hear. For the record, the challah today was much enjoyed.

Today the main complaint was fatigue. Which makes sense, right? Looking at the busy day she had yesterday, plus today being up and eating so much, it means that the naps were less frequent. So the goal for tomorrow is more sleep. She doesn't have OT on the weekends, so that's one less sleep interruption. (Not to say that OT isn't essential, it's just that tomorrow she should be able to get rest, which is important, too). So, if you're planning on visiting tomorrow, please remember that you won't be able to chat if she's sleeping.

I'm hoping for a restful, comfortable weekend. Monday starts round two of chemo, which I'm already dreading, but hoping that with the new pain medicines and IV anti-nausea, this round doesn't take quite so much out of her. On a personal note, I'm looking forward to tomorrow, too. After work tomorrow, I will have two days off in a row before I go back for 7 days on, one day off, then another 5 days on and then probably back to Seattle. Very much looking forward to acupuncture, a long run, brunch with lovlies and maybe even a little bit of that elusive magical thing I hear stories of: sleep.

2.10.11

AYNSLEY:
By all accounts, a great day. Mom was able to get outside and enjoy some rare Seattle sunshine. Dad bundled her up, got her in the wheelchair and off they went on a walk. I didn't hear Dad's side of the story, but Mom said she had a wonderful time. The KG Home also had a visit from the local high school's jazz quartet. As Ross arrived for his visit, he first heard the music and knew Mom must be upstairs listening. He peeked into the room and saw her sitting in the wheelchair, bopping her head along.

Mom learned how to dance her head like Stevie Wonder in a yoga class and now employs the technique regularly. So please picture her, sitting in the wheelchair, doing the Stevie Wonder. To a high school jazz quartet. These are the images that I hold on to. You simply can't cry with despair when you have that image of her, still enjoying life, still the prettiest person in the room, savoring the beauty that's still available to her. And there is still so much that she can access.

She is looking forward to Shabbat tomorrow-easily her favorite thing to eat these days is challah and Friday nights are matzah ball soup and challah night. And I have no doubt that she'll eat a good amount of it. The nurse practitioner ordered an intravenous anti-nausea medication to come 30 minutes before meals-today was the first day it was delivered, and the staff kept sending it at the same time as the meals. So she would wait half an hour for the meal and just have things reheated. We're hoping they can get the timing better tomorrow, but even if they don't, just knowing that she's able to get and keep more food down per meal is great. She threw up her pills this morning, but that was it-breakfast stayed down.

Physical therapy was great today, too; she rode the bike for 10 minutes and did all of her exercises. She sounded tired when I spoke with her this evening, but considering how much action she had in her day, no wonder. I hope she gets a lot of rest tomorrow, but it is clear that she benefited from the break in the chemo this week.

So, I guess the question is how round two of chemo will go, which starts this coming Monday. I hope that she'll be able to continue to gain strength, that the anti-nausea medications will be available and work for her, and that she'll be able to get all of the rest she needs.

2.9.11

AYNSLEY:
Wow. I was so out of it last night, I wrote the date as January 8th instead of February 8th. And didn't notice it until tonight when I looked again at the blog stats.

Someone asked me how it felt to be back, assuming that now that I'm home, I have time to relax and am enjoying free time. Not exactly. Today is a good example of an average day: I taught a spinning class at 6:30am, went to work from 9:30am to 7:30pm, where I taught a sculpting class at 6:30pm, got home by 8:15, caught up with my parents for a half an hour, then caught up with Gary before he went to bed at 10. I'll probably get to sleep at midnight. Today was a good day: I didn't cry at all. Yesterday an adorable mother/daughter duo got on the train as I was going to work and I bawled the entire commute. They reminded me so much of May 2009 when Mom came to visit me for a week. I had just started dating Gary, had just moved into my very first solo apartment and was the happiest I've ever been. We went to IKEA, where she patiently waited out 3 of my meltdowns. We went to camp for Women's Wellness Weekend, where she outdanced me on Saturday night. She helped me decorate my apartment, I made her kale and eggs for breakfast; it was such a delicious time for us, blurring the mother/daughter line, crossing into true friends.

So now I'm trying to find the aspects of her strength and positive outlook in my DNA. I'm going to have to learn how to go to IKEA alone and put the meltdowns aside. I'm going to have to buy a wedding dress that she can't see, and she can't help me with, and trust that somewhere I must have absorbed her patience and perseverance. I won't pretend that I have anything close to her taste, but with enough patience, maybe it won't matter.

The good news of the day is that Mom is eating better. When I left, she was literally eating one bite of each item on her tray, and that was it. Maybe 6 bites of food a day. The past three days, she's been doing more than 6 bites at each meal. And this morning, those 6 bites were eggs and cheese, which I'm ecstatic about-I know she was loving the cream of wheat, but eggs and cheese are so much more calorie dense! Another positive is that she's now going to get an anti-nausea drug intravenously, which is great. Anything to reduce what she has to swallow is awesome. And they're going to increase her pain medication in the hopes that will help with her stomach discomfort as well. So, maybe she'll really be able to get a lot of food in her in the next couple of days. A couple of days ago, she said she would love to be able to eat an entire challah-it's not her appetite that's preventing her, it's the stomach pain. So, here's to pain meds working, stomach/espohagus healing and eating an entire challah. Amen.

2.8.11

AYNSLEY:
Honestly, more of the same. Mom continues to be ruled by the physical that she can't control and by the emotional that she can. When it's an issue of mind over matter, her mind wins. She continues to make progress by leaps and bounds in physical therapy and occupational therapy. Today she walked farther than she ever has, and it was after doing all of the standing exercises. So she continues to push her strength and let her determination push the boundaries.

And when it's a physical issue that she can't positive-think her way out of, she falters. She vomits the entire contents of her stomach, which at this point is mostly bile and acid. She can't eat because it's too uncomfortable and now the food is tasting off: jello today was too salty. She couldn't do PT at 10am this morning because the nausea was too much to bear in a vertical position.

So she did PT at 5pm. After the nausea subsided, after visiting with friends and family, after drawing strength from wherever it is she's drawing strength from. So, are there setbacks? Constantly. But is she improving? Certainly on some level she is. Her endurance and stamina have grown exponentially. But at some point, she'll tap out. Food, in its most elemental aspect, is energy. And about 60% of our calorie needs go to simply running metabolic functions. The brain needs glucose to work properly. And as a nutritionist, and a daughter, I worry about that. Because I know how proud she is of all of the therapy accomplishments she's made. I can't bear to see that be taken from her, too.

2.7.11

AYNSLEY:

My parents were able to speak with the oncologist today, and get some questions answered. For example:

Q: Why does Mom have a huge rash that looks like a severe sunburn on her chest, throat and face?

A: It's called a "recall rash" and it's a residual result of radiation. It doesn't itch or hurt, but it does crack and bleed occasionally.

Q: When will we be able to assess if the systemic treatment is working?

A: After two full rounds of Taxol. A round is a 3 week segment of 2 weeks receiving treatment and 1 week rest. We are in the final week of our first treatment, which puts us at scheduling a diagnostic MRI or CT scan the first week of March.

Q: Why is Mom having trouble swallowing?
A: Good question! (Or, as the oncologist says, "that's a head scratcher.") Mom had a barium swallow test today to see if there was anything obstructing her esophagus. The good news is that there is not an obstruction. The bad news is that they don't know why it's so sore and raw. The going hypothesis is that it's also a result of radiation, but the doctor wasn't willing to bet money on that answer.

By all reports, Mom looked good today. She certainly sounded good on the phone. She ate a decent amount of breakfast (which is half a serving of cream of wheat) and five bites of pasta at dinner. One bite of salad and one bite of soup. I'm guessing she weighs about 98 pounds. But she's in good spirits, enjoying her friends and still determined to eat. She said yesterday that she wished she could eat an entire challah, but the sore throat won't let her. She's not really nauseous any more, either, so once the throat stuff clears up, she should be able to get some good calories in her before next Monday's Taxol treatment. She started taking steroids again today in hopes of clearing up the rash and I'm hoping it will help with her throat, also.

Tonight on the phone she chastised me for sounding too stressed out. So, I'm following Mother's orders and going to sleep.