3.3.11

AYNSLEY:
I got stuck in the elevator today. Each visitor is required to check in and get a badge allowing them access to the floor they are visiting. The badges are supposed to be deactivated overnight, but sometimes are not. Last night, I spent the night. When I left the KGH today at 3pm, my badge had been deactivated, but I didn't realize it. You need the badge both to summon an elevator and to pick your floor once inside, but I went in right as someone came out and didn't realize my mistake until the elevator doors closed. The elevator wouldn't move. The doors wouldn't open. I considered my options.

This seems to be good analogy of my life right now. Inaction is the most comfortable option. I was very resistant first to make a call about changing the wedding date, then to send out invitations, then still to solidify details. I'm paralyzed about what to do about my life in NY, if I should continue to pursue clients, if I should renew my lease. It feels easiest to just shrug and not plan, to just see how things go. But the reality is that goes against every fiber in my being. I am a planner. I need to know how things will go. Not having any idea where Mom will even be in a month is beyond frustrating. I need to plan! I need to book flights, to arrange meetings, to stock my freezer. Truly, this is a good lesson for me, this living in no man's land. But at what point do I get to say that I've learned my lesson?

I left today at 3pm. I needed the night off, to do work, to see a friend, to exercise, to solidify plans (ok, to pick out the shoes I'm going to wear when I marry Gary). It was excruciatingly difficult to leave, and yet I couldn't wait. I was so antsy for a work out, jonesing for a shower and very ready to check the shoe task of the list of annoying little details to iron out for the wedding. I am not super into being a bride-this is not my idea of fun. The only thing I like to shop for is food and having to take time away from Mom to pick out shoes is ridiculous to me, not a nice distraction. And I had a lovely dinner with a friend and got a good sweat on and enjoyed my shower and picked the damn shoes (thank god for Zappos). And felt guilty as hell for being away.

Mom ended up having a great day. She woke up kind of nauseous today and had a difficult time with breakfast and pills, but right in the middle of PT sort of perked up and turned it around. She started with a short walk on very wobbly legs, but ended up doing lots of exercises and walking again later, this time much more stable. Lunch was corned beef and cabbage with potatoes and mustard: jackpot! She ate about 1/4 of the corned beef and some potato and cabbage around noon, then power napped and had another 1/4 of the corned beef, more potato and some potato chips around 2pm when she woke up. Oh, and on the subject of sleep: 7 hours uninterrupted last night-amazing. She really got good rest today, which was so needed. I hope Dad gets as lucky tonight and has an easy night. It doesn't quite seem fair that I've had the easy nights so far. I offered to stay again tonight; really I enjoy the time, but Dad misses her when he's gone and has graciously agreed to let me stay every other night. He isn't really going to give me any more. I'll take what I can get.

Back to the elevator: clearly, I got out. I waited a few minutes (which is a long time when you're stuck in an elevator) to see if someone would summon it and I'd be let out. No such luck. There's an emergency call button that I finally pressed and the person who answered sent me to the lobby. Just goes to show: you can wait for things to happen to you, or you can make them happen. Inaction will not get me anywhere right now; I need to make active choices about the course of my life. I need to own that I'm choosing to live in NY, continue the work that I do and the life that I lead and be a part time daughter.

3.2.11

AYNSLEY:

Dad and I are trading off nights we stay with Mom. Last night he stayed, so I was able to sleep a full night (asleep by 9:45pm, folks) and work out this morning. When I arrived, Mom was in the midst of breakfast, which she really did well with-almost an entire egg, half a bowl of cream of wheat and about 1/5 of a croissant. In real life, that's about a Mom-sized breakfast. Lunch wasn't yummy to her, so she only ate a few bites of soup, but at about 1:30pm, she ordered a grilled cheese sandwich and ate almost 3/4 of it.

In addition to increased portions from yesterday, Mom also had a much better PT session: she walked 210 feet and did some foundational exercises, too. While she was taking a walk, the cleaning crew mopped and cleaned her room really well, which was great, but the chemical smell set her off and she battled nausea for the rest of the afternoon. Even tonight, at 9:30pm, she asked for 7 Up and a basin. She didn't need it, but still.

I don't know why she's nauseous. It can't be chemo...maybe it's the antibiotics? It's frustrating and sad-she's trying to eat more and working hard in PT and OT, and then the queasiness sets in and sets her back.

Highlights of the day include her picking out her dress for my wedding. We ordered her a gorgeous and comfy dress that looks great on and is loose and flowy and beautiful. Dear friends are on shoe patrol for her-searching for metallic ballet flats that will match. One more thing to be able to check of the list and not have to worry about.

3.1.11

AYNSLEY:

Last night I stayed with Mom for the first time in probably a month. There's definitely a learning curve, or a relearning curve. I'm a heavy sleeper, which is terrible. At 4:30 this morning, I woke up to her sort of whimpering and with one of her legs off the bed-whether it slipped or she was trying to get up I don't know, but I felt horrible. I didn't wake up right away. It's the ultimate feeling of guilt-it's my one job to stay with her through the night and make sure her needs are being met and I fail. And then at 7am, the nurse gave her anti-nausea medication through the IV. I knew that Mom needed to wait 30 minutes before eating after the drug, but I didn't know that she should eat within the hour. Mom was tired, so I let her sleep. She finally woke up around 9:30 and then we started breakfast. She also needed to take her morning pills, which usually we can do while eating. After a couple of bites of breakfast, I gave her two small pills and she became pretty nauseous. She stayed queasy until noon, when she got another hit of the anti-nausea drug.

Feeling sick translated into more fatigue and instability. She had abbreviated physical and occupational therapy sessions, which was disappointing because yesterday she was so strong in PT. But she did get a lot of naps in today, and slept a lot last night and this morning, which I also need to remind myself is integral to healing. And she ate decent amounts of lunch and dinner. Decent amounts are: lunch: 2oz soup, 1 oz ground beef, 2 oz mashed potatoes and a couple of baby carrots; dinner: 4 oz soup, 3 oz broccoli and eggs. She also had one quarter of a sesame and honey treat-she liked it a lot, but probably ate 40 calories worth. She's simply not getting the calories she needs, and I know we'll need to have the feeding tube discussion again tomorrow after hearing what the oncologist says.

All in all, not a great start to March. The weather didn't really come in like a lion, but Mom's illness did.

2.28.11

AYNSLEY:
Perhaps I am delusional? It's crossed my mind several times in the past two months-Magical Thinking, refusals to accept help from loved ones, then accepting too much...and now today, a conversation about enteral feeding. I'm a nutritionist, for god's sake. Have I just turned a blind eye to the amount Mom's been eating? Has it just improved so much from those first days in the hospital when her pain wasn't managed or since chemo days where nothing stayed down? The fact is that she's not eating enough. She is eating good calorie dense foods: today guacamole, other days eggs, cheese, meat, but it's not enough. Three bites of guacamole will not arrest the weight loss. So today, we had a sit down about tube feeding. Of course, that's a last resort and we don't want to have to go there. But if these weeks without chemo can't be used to recuperate and eat a lot, we're going into chemo in an even more weakened state.

Just an aside, proving the delusions again-I always say "we" like I have any ownership in this process. Like I've also lost my hair, my appetite, my strength, faith in my body...I know it must annoy her to no end to hear me say "we" like that.

Anyway, weakened state. We're hoping to meet with the oncologist early next week to discuss the nutritional deficiencies at length and see what he thinks about the possibility of surgically implanting a tube in Mom's stomach. And also if he's as concerned with her weight loss and low blood protein counts as the KGH staff is.

After the discussion today, Mom made a considerable effort to eat more than she wanted to. When she's motivated, she can override her inclinations; she really really really doesn't want to do enteral nutrition. So now it's just a wait and see game to determine if she can maintain that drive and realistically double her food intake over the next week. We're stocked with calorie dense foods over here and are hoping that maybe she'll gain a pound or two soon.

2.27.11

AYNSLEY:

I started reading The Year of Magical Thinking by Joan Didion today, on the plane. Beautiful, heartbreaking and so so true. She keeps coming back to the refrain:

Life changes fast.

Life changes in the instant.

You sit down to dinner and life as you know it ends.

And she tells her story, her husband's story: a massive heart attack that probably killed him instantly as they sat down to dinner. She tells countless other tales that belong to other people and they all echo that same bewildered sentiment "...and then-gone."

These are all stories where the person is now gone, but I'm clinging to the "life as you know it" part as what's disappeared in my life. One day, we were chatting on the phone about menu choices for the wedding in July, abstractly planning my next trip to Seattle to shop for wedding dresses and wishing for better weather to bike rides. And then, everything changed. The week before Mom got sick, I went to visit a friend for the weekend who had recently been visiting many people in the hospital. I became acutely aware of how lucky I am, how I've never had to sit in a hospital waiting room and fear for someone I love. How I couldn't even fathom how to identify with that life of uncertainty. I felt the gratitude of knowing my little nuclear family was healthy and whole. Six days later, I was on the phone with that same friend, the only person I could bring myself to call. And I wondered: had I known this was coming? Had those moments of gratitude really been premonitions? If I hadn't felt so smugly secure, could this have been avoided? Magical Thinking.

Didion researches grief, contrasts it with mourning and spells out the process that is innate to every human being (and many other species, too). I have always loved the Jewish mourning tradition of tearing something, that ritual where you have to hold on tightly to get a grip, then destroy and let go. We all go through this in some form or another, at many different stages of our lives. And I can't mourn my mother right now-she's very much in the picture, fighting to gain strength, eating more each day, enjoying friends and family and bacon scones. So I mourn the loss of normalcy. Of living my life in New York without guilt. I mourn time lost with my family when I'm away and I mourn time lost with my friends and Gary when I'm in Seattle. I mourn the hours of sleep, the hours in the gym, privacy, cooking, worrying about something frivolous like a menu for a party.

It's amazing what you worry about when you don't have anything to worry about.

And then I stop the pity party and celebrate the gifts we have been given. What an honor, in the months before embarking on my marriage, to witness the strength and devotion of my parent's union. What a privilege to spend time with people who want to come daily to visit my mom, who have built a safety net and hold it taut below my family, ready to catch any one of us should we falter or fall. What lessons I have learned in the hospital and home, watching the people who devote their lives to healing, comforting and care taking.

I am working on ignoring, or talking myself out of, the magical thinking. The bizarre rituals I have adopted since this diagnosis: only wearing my mom's socks, for example. It is physically impossible for me to wear my own socks, and yet I realize that this really holds no bearing to her getting better or getting worse. But I can't stop. To me, not wearing her socks is a betrayal of some sort that I can't identify, but feels wrong. (I do wash them all, by the way-this isn't some sports superstition thing). There are others, too, and it feels good to read that other people have adopted other ridiculous things like this to help them cope. It's not just me being an obsessive compulsive wack...though there definitely is some of that, too...I think we cling to rituals or explanations or magic to provide solace in the unexplainable. It's too frightening to know and accept that things are random, uncontrollable and temporary. But what really provides the solace is what comes out of the uncontrollable. The choices people make to stand strong when it's easier not to. Watching my mom refuse to be a victim, hearing her enjoy the moments she does have, instead of mourning the things she has lost. Maybe by March 26th, I'll be able to not wear her socks. They probably won't go with my dress.

2.26.11

AYNSLEY:
Mom seems to be okay without the morphine! She skipped her morning dose and has been comfortable, pain-wise, without it. Her stomach was giving her some problems today, but finally resolved by late afternoon, so now she's focusing on catching up on rest and relaxation. Hopefully even cutting her morphine dose in half will help with the unpleasant side effects and keep her as comfortable as possible.

I am catching a cab to the airport in 5 hours, so please forgive the brief update. Just know that things continue to be stable, which no one can really complain about.

2.25.11

AYNSLEY:
Things continue to move in the right direction. Mom is eating like a champ and exercising hard. Today it was decided that she's going to start taking her morphine only as needed, instead of every 12 hours. She said that she's not really in pain; she has some stomach discomfort, occasional aches and the feverish shivers are uncomfortable, but no real pain that needs to be addressed. Of course, she might not have pain because she's on morphine all of the time. But we're going to see how she does without it. It's causing some more unpleasant side effects, so it's worth it to try to go off. She can always start up again.

Things have steadied out to a different energy again-we're not all in emergency mode. And coming into the weekend, with me coming back into town on Sunday morning, I think Dad is able to relax a little bit (I hope). Though I wonder what will happen once we all let our guards down a bit, if we allow ourselves to turn off the Fight or Flight mode of operating. I suspect we'll all get colds or the flu or oversleep five days in a row. As it is, we're all still a bit too wound up to let that happen. I've been telling friends about how intense the past two months have been and how Dad hasn't really slept since mid December and everyone has a story about how they defied and overrode their biology to power through something that was necessary. Most often it's school exams, but definitely caring for loved ones falls into those categories. I have friends with small children who haven't slept more than 5 hours in a row in years. They manage. We all do.

Someone emailed me that God never gives us more than we can handle. Now, I'm no Believer and I don't think we're gaining strength from anything as sentient as a God. But I do believe in prayer. I think that love is powerful beyond measure. I think that if we choose to, we can dig down deep, and deeper still, and find continued strength within ourselves. And if we find it lacking, we can accept it from others who share it. I think it's renewable and chargeable and continually growing on itself. It we go into despair, it will consume us. So too will hope. So that's my wish for my family, and for everyone who so generously keeps us in their thoughts and prayers. May we all be consumed by hope.