6.30.11

AYNSLEY:
I send off June with anxiety and helplessness. Mom just came out of a successful surgery to remover her OMaya Reservoir. The neurosurgeon said everything went well and that though Mom has a minor infection, she wouldn't have been able to fight it off with a foreign body implanted in her brain. Now that it's out, the infection should clear up easily with the course of antibiotics that has already begun.

Six more weeks of antibiotics. This means that chemo can't resume for another six weeks. So Mom is going essentially cancer-treatment free for the next month and a half. It can't be helped, though it makes me even angrier that Dr. C. didn't coordinate better in the first place with the radiation oncology team.

That's part of the helplessness-nothing I feel or do today can change any past events. Nothing I think or say has any bearing on the outcome of Mom's disease. I can scream at the doctors (which I don't), I can throw tantrums in my apartment 3,000 miles away (maybe this happens from time to time), I can take a page out of Mom's book and accept each day and try to make it the best it can be (which I struggle so hard with, I am trying to live up to this set president and falling so pathetically short)...but most often I just do nothing and either listen on the phone or listen in person and wonder how much more she can take. I just get so sad that she's had to take so much already and knowing that there's surely more in store.

My parents will likely be staying at Overlake for another two days. Mom wasn't able to eat anything today due to the surgery this evening, (though she was able to negotiate one ice cube at some point this afternoon, which she savored, and if that doesn't break your heart, man...) but all day tomorrow and maybe Saturday she'll be able to enjoy the awesome Overlake menu. She and my dad also have the perks of the amazing Overlake staff, who we all adore and who are all exceptional.

6.29.11

AYNSLEY:
That fluid seeping from Mom's surgical site yesterday started up again today, so my parents are headed back to Overlake tonight to see the neurosurgeon who put it in. It's possible that something somewhere around there is infected. The reservoir may need to be removed, which will likely happen tomorrow, though I suppose it's possible to happen tonight. In any case, they are sleeping at Overlake tonight.

This is where the time change kills me. It will be the middle of my night before they know anything.

Other than the mysterious seeping, Mom had a nice day. She worked out with the PT assistant, which means she got a lot of walking and stretching in, and she got caught up with some cousins, which she enjoyed. She and Ross slept in this morning and had a good night last night; she sounded well and not really concerned about the reservoir. I don't know if we all just put on a brave face in the midst of brain surgery or if she really is just accepting of everything at this point. Not that she ever wasn't-every surgery, every treatment, every poke and prod Mom welcomed without complaint and without hesitation. I'm too afraid of epidural medication to want to give birth at a hospital and Mom is gamely heading into brain surgery without fear. I still have so much to learn.

6.28.11

AYNSLEY:
Mom had another great day today. After a fabulous PT session yesterday, including a pretty intense IT band massage, she worked hard again today, walking with minimal assistance and doing lots of stretches. Ross was able to hang out with her for most of the day and is spending the night with her tonight. I'm envisioning a sing along; Ross has his guitar and Mom likes to jam.

Yesterday Mom had some a small amount of fluid seeping from the site where her OMaya Reservoir was implanted-the doctor on call took a look and called Dr. C and the neurosurgeon who put it in in the first place-but is was a very little amount and it didn't bother her, cause a headache or look like an infection of any kind. She just isn't supposed to wear a hat if the surgical site is uncovered. The Kline team put some gauze on it, but Mom didn't even really miss having a hat. Her hair is growing in, fine and soft, and salt and pepper color. Some spots look gray, but some look dark brown. Kind of funny for a life long blonde. If it keeps growing in, she should have a cute little pixie style in a few months (with a couple of bald spots where maybe radiation was heaviest)

I flew home today. I had an interesting TSA fiasco (always happens at Sea Tac for some reason) which involved me being felt up not once but twice and testing positive for explosive material not twice but four times. Despite this, I was still on time for my flight and made it home by 5:30pm. I'm hoping I'm able to fall asleep at a reasonable EST bedtime tonight and be able to chat with Mom and Ross tomorrow morning.

6.27.11

ROSS:

Sorry, I had one task for the blog, to write a quick recap of yesterday, and I got home last night and went straight to bed. Well, yesterday mom worked with her PT and she was walking down the hall with very very little support. Her PT had her arms out to catch my mom incase she fell, but other than that, it was all mom. She was walking great. Her PT has suggested my mom get a walking stick, believing that perhaps a great deal of her difficulty walking is a result of not knowing what's in front of her. Having a walking stick would allow her some extra guidance and confidence which may greatly increase her independence. We will see. Mom ate quite well yesterday too. I'm with mom now and asked her if she wanted to add anything.

FLYNNE:

We had a nice, very relaxing monday evening together, enjoying each other's company. Aynsley is on her way back home to New York it's always great to see her come, and hard to see her go. Today, I'm excited to listen to some guitar playing (I've got my guitar here today and we're about to start singing).

6.26.11

AYNSLEY:
We celebrated Father's Day today, a week late. Dad golfed with Ross and his brother and nephew in the morning and early afternoon. The weather was perfect. Mom and I went to a meeting of a charitable contribution group that she's involved in. The ladies were nice enough to meet at the Kline instead of the regular location, and even nicer to let me sit in. I tried to respect the group and keep my mouth shut, but of course had little success. I read on a baby development site that from the time the fetus develops ears, its favorite sound is its mother's voice. Gary finds this hilarious and appalling-I may be slightly overly talkative (annoying) and tend to sing frequently and badly and Gary feels sorry for our child who will have a warped sense of a nice sounds. The group was lovely, though, and Mom really enjoyed "seeing" them again. Any and all semblances of normalcy are always appreciated.

Dad and Ross returned to the Kline late in the afternoon and we all trekked over to my parent's house for our Father's Day California Pizza Kitchen dinner. Mom's brother and his family joined us and we all sat at the dining room table, enjoying the meal and the company. And the fact that the Kirshenbaums were able to host a dinner party, in any capacity. Mom seemed to enjoy the field trip, but was pretty tired by 7:30pm and ready to go back.

Between the meeting this morning and leaving for home this afternoon, Mom slept. About 3 hours. She is noticeably more tired than the last time I was here, taking longer and more frequent naps and sleeping more during the night. I try not to worry and remind myself that fatigue is a very common side effect of radiation. And she has basically had radiation every 5 days out the 7 since I was here last. She also is having a slightly more difficult time walking to the bathroom and adjusting herself in the bed. Again, most likely due to being exhausted. I know this on an intellectual level, but it's hard to turn off that little voice in my head that wonders about the things we can't see. And worries.

6.25.11

AYNSLEY:

We had lovely Saturday. The weather cooperated and we were able to get some sun on the back patio. Mom felt well all day; she got a few good naps in and ate all three meals and snacks, though moderate amounts. I can't really tell if she's eating less than she did the last time I was here, but it seems like maybe her appetite isn't as strong. Though Ross mentioned that he's noticed the break in chemo has been good for her appetite. She always asks how she did when finishing a meal. "Did I do at least half?" or "I must be doing well with this, right?" Again, not being able to see if a hindrance; she has no idea how much food she should be getting through. For the average American, this is actually a wonderful practice: eat slowly until you're satisfied, not until the plate is empty. But in Mom's case, where she could really stand to double her calories, I wish she had a visual cue to shoot for.

I'm staying overnight with Mom again tonight and looking forward to it.

6.24.11

AYNSLEY:
And, boy, did Mom catch up on sleep today. Last night we slept with the windows open and listened to the rain fall all night. Mom was up once to pee, I was up four times. Mom slept until 8 or so, then we had a few hours to ourselves, which was great. Mom dozed on and off throughout the morning and early afternoon, then walked up and down the halls without a walker, with only the therapist gently touching her hip bones. She ate a great lunch, then slipped into a two and a half hour nap. When she finally woke up, she wasn't feeling great. She was a bit nauseous, achey and crampy, but that subsided by 9pm ish. She didn't eat any dinner due to the discomfort. But she still enjoyed listening to the banter of all of the visitors today, sometimes dozing to their stories, sometimes fully engaged in conversation.

I think she was just overtired from the weeks of radiation and travel. Today was really about rest and restoration, massages and stories. I'm glad I was able to be there for so many hours in a row.

6.23.11

AYNSLEY:
Today was hectic and lovely. We had a constant stream of visitors from 9:30am on. Mom was thrilled. At 1pm, after not having a chance to nap because she was too busy chatting, Mom did her best physical therapy session ever. The PT said she was practically running down the hallway. Then at 3pm, still no nap, Mom headed to her last radiation appointment. There were lots of hugs and wishes sent as we left, though Mom has a follow up appointment next week just to check up on the rash and make sure it isn't bothering her too much.

Last night it itched all night. The fabulous radiation oncology nurse told us all that it might get worse before it gets better, but it should start getting better soon. She's always so honest and real-tells it like it is, which we all so appreciate. So far, tonight it seems to be itchy, but manageable.

Dad finally consented to let me stay the night with Mom. He kept trying to get me to postpone, but finally relented at 9pm when he left. My cold is almost gone and I feel 100% fine. I've been wearing a mask all the time I'm with Mom and think that tonight will be fine. And I'm very much looking forward to our morning time tomorrow.

The radiation left a large red mark across Mom's chest-it looks like a bad sunburn and seems to feel that way, too. But the rash has receded a bit and should continue to do so.

Mom's hair is growing back. The one thing they told us absolutely would not happen.

6.22.11

AYNSLEY:
It is wonderful to be in Seattle today, the first full day of summer. I went with Mom to her second to last radiation appointment; she is always a trooper. And the team is just so lovely, I can't say enough good things about them. When I walked in, the main nurse rushed up to give me a hug and congratulate me on the pregnancy (my parents aren't the best secret-keepers in the world) and as I saw each technician, they all did the same. But their true nature came to me as they were getting Mom in position on the table and getting the radiation machine all set up. The piece that administers the radiation needs to be positioned right next to Mom's elbow. So, as they move it in place, someone always has their hand on Mom's elbow, protecting it from hitting the machine. A nudge is all it would be; it wouldn't be painful or startling, but that's just the way they operate. In every aspect of their care, they are gentle and thoughtful and caring. We've worked with many wonderful staff over the past 6 months, but this team consistently puts a hand on everyone's elbows. I almost asked the technician about it today, wondering if they all get kindness training when they are first hired.

Mom's stomach hasn't been wonderful today, but it's not awful. She napped a bit after radiation and slept up an appetite for ribs, greens from Ross's garden and potato salad. I'm sure Gary is sorry he missed out. I'm sleeping at my parent's house tonight: I'm fighting a cold and it's not losing gracefully. Tomorrow I plan to have a girl's night sleepover.

6.21.11

AYNSLEY:
Solstice. A half year since Mom's diagnosis. The earth has cycled from the peak of darkness to the peak of light. So too has my family. Not that everything is fine now, we clearly still live life in the constant shadow of cancer. But we have learned lightness from Mom's ever positive outlook, learned community from the endless parade of visitors and helpers, and learned acceptance from simply being inhabitants of this universe.

And though those first weeks were gut wrenching and horrible; and though those first two months were impossible, dividing my life between two coasts, always wishing I was somewhere else, always feeling in the wrong space; and how even now I will sometimes find myself sobbing uncontrollably because I feel so achingly sad about how Mom's life is now, I have found it impossible to sink into depression or despair. In fact, quite the opposite. I refuse to be angry at life. And as the greatest F U to cancer I can think of, Gary and I are planning to welcome a child into our lives.

My pregnancy has brought me even closer to Mom. My weeks 6 through 12 were basically spent in a nauseous haze, though there were some inexplicable bright days. Inevitably, those were days that Mom was also feeling abnormally good. And days where I couldn't leave the couch until 1pm, I would call Mom up and we'd discuss ginger ale and peppermint gum and saltines. And now that I am on the cusp of my second trimester, and feeling more like my normal self, Mom is also feeling great. I gained five pounds, she gained one. We both sat in the solstice sunshine today, though on opposite coasts; tomorrow we'll sit in the same room.

Everything about the past six months has prepared me so well for pregnancy. I have had a completely normal and healthy pregnancy for the past 13 and a half weeks. Everything is progressing the way it should and we have no reason to suspect we won't have a healthy baby this January. And yet, I have other dear ones who have lost a pregnancy at 14, 18, 39 weeks. I know nothing is promised to us, that even if pregnancy and birth go perfectly, we still run risks of loss. That's life. That's part of the wonder and mystery and sheer joy of everything. We get to hope with all of our hearts. It's healthy, this hope. It's terrifying and irrational, but what better way to mark summer solstice than with hope. Knowing that the days now will start to get shorter again, and we're slowly marching our way back to the dark time of year, we hope that in next year's darkest days, we'll have a new member of our family.

6.20.11

AYNSLEY:
Because I am incapable lately of staying awake past 10:30pm, I didn't get to fill you in on the full field trip. It was awesome. Mom was away from the Kline for about 5 hours! They spent about 4 hours at home, lounging on the couch and chatting. At some point, Chinese food was ordered and eaten. They went back around 7pm. All in all, glorious. I'm hoping that maybe I can go along on the next one, or at least at some point when they go.

Mom's fever was also gone this morning. She said she was feeling great and sounded so on the phone. She had a good appetite and was eating cheese lasagna for dinner. I think the weekend really did her good-a restful, relaxing Saturday and Sunday at home.

6.19.11

AYNSLEY:
FIELD TRIP!!! Mom is presently at home, sitting on her couch, enjoying snacks from her cupboard and enjoying the company of her family. She said it felt great to be home. The living room is actually down two steps and there isn't a railing, so she said that was tricky to navigate, but overall, she felt that coming home may be a viable option in the future. I just wanted to make sure she felt safe there, and today, at least for the time she was there, she did.

The worrisome news of the day is that Mom has a little fever. She doesn't have any symptoms or feel bad, but there's a little low grade fever that started to show up last night. When it got a little bit worse this morning, the nurses gave her a bit of Tylenol. For now, we'll just monitor it. If it doesn't go away, or makes Mom uncomfortable in any way, they'll take some samples and see if they can tell what's going on.

I'm trying to figure out how to "sandwich" this post-in fitness trainings, we're taught to sandwich critiques: first tell someone what they're doing right, then provide criticism, then finish with something else positive. I'm trying to end with another positive remark or story, but I think today accurately reflects life as we now know it. There are great things and not so great things, often happening in the same day. Honestly, often happening in the same moment. We just have to take the good where and when we can and enjoy it.

6.18.11

AYNSLEY:
In honor of Father's Day, Gary and I watched Duck Soup tonight, celebrating my dad's borderline obsession with Groucho (I estimate that he has been Groucho for Halloween at least 25 times). When I told Dad we watched it, he got excited, then suggested we watch every other Marx Brothers movie as soon as possible.

It poured all day in Seattle, so the field trip home was postponed. Mom is really looking forward to sitting on the back deck and feeling the sunshine, so it makes sense to visit the house when there's at least a chance of sun. The forecast for tomorrow is nicer than today, so maybe tomorrow.

Mom was feeling well today and I'm sure was happy to have a break from radiation. She never complains about it, but I know the drive back and forth in addition to the treatment are exhausting. Hooray for the weekend.

Happy Father's Day in advance to all you dads out there, especially my very own amazing dad and my wonderful father in law. I love you!

6.17.11

AYNSLEY:
I know I've gotten a bit of a reputation for being a tad on the "out there" hippie spectrum. I was catching up with a friend last night and we were talking about our marriages and religious views and I joked that I've really become a pagan since Mom got sick. I've fallen in love with rituals, with marking the changing of the seasons, and changes in our lives, intentionally. So many things we do without realizing the meaning behind it or without taking the time to absorb it.

I used weddings as an example: in most cultures, there is a period before the wedding that is sex segregated. What are now bachelorlette parties started out as preparation for the bride-to-be to talk with other women about the changes she was going through, transforming her identity from maiden to lover, creating a safe space before entering the unknown. It's important.

The same goes with marking other life cycle events. Another dear friend, a new mother, wrote to me after I posted Bruce Feiler's essay and told me how much she thought his advice could cross over to friends and family members of new parents. How it's essential to mark such a significant shift with caution, respect and love.

Summer solstice is upon us: four days away. I always have trouble sleeping around the "turning of the wheel," the times of year when things shift from one season to another. I have vivid dreams and often wake up very early in the morning and can't fall back to sleep. My body feels the shift and is unsettled. It's been happening to me for as long as I can remember, but I never really understood it until this year. And now I embrace it. I feel connected. I am connected by unseen forces to my family 3,000 miles away: by love, by worry, by pride, by blood. I am connected to my family here: by blood, by worry (c'mon, we're Jewish-can't escape that), by choice, by ritual. And as corny as this sounds, I am connected to the planet, to the inner workings of things I am only beginning to understand, but that feel real and true.

Whatever rituals we have: mourning rituals, celebration rituals, acknowledgment rituals, they serve a purpose. Perhaps you aren't planning to celebrate solstice by sitting in a circle with a group of women and invoking the goddesses to guide you through your life's lessons. Maybe you aren't even going to make a solstice cake. But you'll feel the shift if you look for it. Maybe you'll just stay outside and watch the sun set later on Tuesday than it's set all week. Or you can just google summer solstice rituals and find one that speaks to you (I recommend a cake).

6.16.11

AYNSLEY:
Since I will be missing Father's Day in Seattle, we decided that the Kirshenbaum Father's Day will actually be Sunday, June 26th. Dad and Ross will hit the links while Mom and I have a girlie morning and then we'll all have dinner together. Hopefully the weather will be even better then than this coming Sunday.

The exciting plan for this weekend is a field trip home for Mom. She hasn't been to the house since December and is really looking forward to it. They plan to stay for a few hours and see how it feels. Mom has spent some time away from medical facilities while at the park, but this will be the first time really having a destination that's actually some distance away from that world. I'm so excited for her.

So, today was really about future plans. Yes, they're all plans for the near future, but it still feels like progress.

6.15.11

AYNSLEY:
Ross stayed with Mom last night and, by both accounts, it was great. Ross was so excited at the prospect and I'm thrilled that both of them had a nice time. In my experience, the nights are fine, but the morning time you get to spend one on one is the real reward. I am always able to sleep when I stay; I don't know how true that is for Dad and Ross (the 3 hour time difference helps me), but it's always such a treat to have all of that one on one time.

Mom had a nice day today. She was feeling good, though lately she's been cold. I suspect the weight loss has something to do with that-there's no fat on her at all. When she goes in for radiation treatment, they give her a heated blanket as soon as she arrives, then another one to take back with her. My parents bring the blankets back the next day and trade for a newly warmed one. Have I mentioned how much I love the radiation oncology team?? They are so so so wonderful. I'm heading to Seattle next week and am excited that Mom's treatment won't quite be finished so I can go with and see the team.

I don't know if Mom really hasn't lost those 4 pounds, I haven't seen her since Memorial Day. Though I suspect she's basing that on her appetite and how much she's eating instead of how much she actually weighs. I'm thrilled that her stomach has been feeling good the past week and that she's been able to eat. But that week of extreme discomfort could have easily set her back four pounds. In any case, as I try to always focus on a) the positive and b) the present, here we are in a pretty nice spot. Mom is comfortable, has an appetite, and is having lots of fun with her friends. So she needs an extra blanket here and there. We can provide that.

6.14.11

ROSS:

When I arrived to the Kline this morning a little before 10 am, mom was hungry. It wasn't just a "I could eat" hungry, it was a "I want a meal now" hungry. We ordered a tuna salad sandwich and mom ate half of it. A couple hours later she ate her lunch meal and then after radiation, she ate a healthy serving of dinner. After being weighed today, it looks like mom has lost 4 pounds. Mom insists that the scale here is inaccurate. I hope so, but her four meals today were very welcomed.

Mom felt good today. I am sleeping in the room tonight with her. It's the first time I have stayed with her all night since she left the hospital and it's the very first time I have stayed with her alone. It's quite different without papa bear leading the way. He has a very thought out and efficient system to making sure mom is fully taken care of. There are other responsibilities too, like getting her to the bathroom and making sure she takes all of her pills. I am glad to be here and have this extra time with mom, and I'm especially glad to let my dad sleep in his own bed tonight and have at least one night a week where he doesn't have to sleep on a mattress on the floor.

My parents dedication to each other and my sister and I has been unyielding. Your dedication to our family has been the same. Thank you everyone.

6.13.11

AYNSLEY:
I came across a wonderful essay by the amazing Bruce Feiler this morning; it was printed in yesterday's NY Times. I adore everything I've read by him, even before Mom got sick, and this was so perfect and spot on. Though I have to disagree with "Never" #2: My thoughts and prayers are with you. I actually appreciate when people say this (though I am not the patient). Even just receiving a short email or text checking in lifts my spirits.

Anyway, I highly recommend it, not necessarily for our situation, but for anytime you find yourself wringing your hands and feeling helpless.

http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html

6.12.11

AYNSLEY:
I'll be honest: today I got nervous. I called my parents in the afternoon and no one answered. This happens often, no big deal. Sometimes Mom is taking a nap, sometimes there's no reception, whatever. Usually I get a return phone call within a couple of hours. But three hours later, I called again and still didn't get an answer. Worried, I texted Ross to see if he had heard anything. Within a minute of sending the text, my phone rang and it was Mom, her voice cheerful and clear as a bell.

She had been entertaining guests during my later call and had been enjoying a live production of Fiddler on the Roof during my earlier call. Between the two, she lounged outside, soaking up the sunshine and snacking on strawberries, carrots and apples that Ross had brought from the farmer's market.

I love being wrong when I'm worrying. For the obvious reason of nothing being wrong, of course, but also the Aynsley reason that every time I catch myself needlessly worrying, I can talk myself out of a future anxiety easier.

6.11.11

AYNSLEY:
Mom's BFF stopped by at 9:30 this morning so Dad could get "a little bit of fun time" and go outside to hit some golf balls. It's Saturday for him, too. This always thrills me. The first time he left Mom's side to do something other than shower and change his clothes was my bridal shower, a full three months after Mom went to the hospital. Since then, he's taken a handful of hours to himself to hit golf balls, watch TV at home and make popcorn.

Mom had a good day, too. She enjoyed knowing that Dad was getting some fresh air and always loves spending time with her girlfriends. Ross came over in the afternoon when Dad came back. I missed out on the family time, but got a good chat in with everyone.

I plan to head back in about two weeks. Very much looking forward to it.

6.10.11

AYNSLEY:
I forgot that fatigue is a very real and very common side effect of radiation. With the exception of the last two nights, every day this week when I spoke with Mom, she was heartbreakingly tired. And I get scared. But I need to remind myself (this seems constant and endless-why don't I learn!?) that she's tired for good reason. That it's not necessary to go into panic mode.

And today she was even better than yesterday. She had a good day. She's looking forward to a special weekend visit and book club coming up.

There really aren't any absolutes here. Nothing is only good or only bad. I know this on an intellectual level. It's just nearly impossible to operate on an intellectual level. In the best of circumstances, I am lead by emotion. In the past five and a half months, I've operated by emotion only.

6.9.11

AYNSLEY:
So much better today. Mom's stomach was much happier, which made her much happier. She had a hard core PT session today: walking up and down stairs, walking the halls and stretches. I can't say enough good things about the therapy team she has. Her physical therapist is so so amazing-constantly pushing her to her limits yet always making it manageable. Mom trains with her twice a week most weeks. The other 3 days a week, Mom exercises with the PT aide, who is also lovely. They walk and do exercises so Mom can maintain whatever new peak she's reached with the PT, and then she summits another.

Throughout this whole process, Mom has never once reached a plateau. She keeps climbing.

There were also many visitors today, which made Mom happy. She was able to travel vicariously and relive her favorite vacation memories with dear ones recently back from trips. I also filled her in on one of the biggest fashion trends I've been noticing in NYC this summer: jumpsuits. She sometimes will ask what people are wearing and I never notice. So recently, I started paying attention and report back to her every so often. She wasn't surprised and could actually describe some of the styles I've seen recently better than me. (No shock there.) It was fun to fill her in and she enjoyed it and asked me to keep my eyes out and let her know what else is out there.

6.8.11

AYNSLEY:
Last night I dreamt that Mom and I were going into a large bookstore together. I knew Mom was sick, but she was her old self: walking, hair, not so skinny. We were about to go inside, when we saw Amy Tan standing outside. We were so excited and went up to talk to her about how The Kitchen God's Wife was the first book we loved together and to thank her for her words. Then Mom needed to go to the bathroom, but she was able to go alone. Time passed, I looked around the store, then suddenly realized I had forgotten her in the bathroom. When I went to get her, she was as she is now and needed my help. I had left her there. It was horrible.

I woke up at 5am and couldn't get it out of my head. Still now, 15 hours later, I can't shake that image. My utter abandonment. My ignorance, my selfishness. And also the reminder of how different we are now. How she won't get to share things like The Kitchen God's Wife with me anymore. How when I discover some amazing writer or choreographer or movie that she would love, I can't share it with her.

I googled Amy Tan. It was such a random appearance in my dream, even that book was odd. Why not The Joy Luck Club? Anyway, the third thing that came up was Wikipedia (I know, I know), but the first sentence is that she is a writer who explores mother-daughter relationships. It's probably been at least a decade since I've read her work, but clearly something about Amy Tan and The Kitchen God's Wife resonates with representing something about our relationship. It was the first of her novels that I read, and it was on Mom's recommendation. But I can't tell you why that appeared in my dream last night. Or what that book is about. Now, of course, I need to reread it; perhaps I will have more insight after that. Or maybe that part was a silly distraction and the only thing that mattered was me leaving Mom when she needed my help. I needed a reminder that it's okay to feel sad and lost and helpless. And guilty. I hadn't been sad in a while, I've been so preoccupied with being angry at doctors and sorting out some other personal tasks. It was my body's way of reminding me that I need to keep the grieving process open. I'm not anywhere close to done.

6.7.11

AYNSLEY:
A frustrating day for Dad and me; Mom wasn't bothered. At 8am, the ambulance arrived to take Mom to her chemotherapy appointment at 9am. By 10:15, Dr. C. hadn't arrived and none of the procedures had began. At 10:30, one of Dr. C.'s colleagues (who we're not crazy about) came in to explain that since Mom is doing radiation therapy, she can't do the systemic chemotherapy.

This would have been good information to have at anytime before 10:30am. Before 8am would have been even better. At 10:30am, Mom has been sitting in a waiting room for an hour and a half, knowing that she's still got a number of procedures ahead of her. This makes me so angry. Sitting there, uncomfortable, with no answers, the lack of communication between doctor and patient, and between medical colleagues...Dr. C. prescribed the radiation, so he knew full well that the two would overlap. Whether he ignored it, forgot or just didn't care to tell my parents, I don't know. It doesn't matter. It's shit like this that makes me infinitely frustrated with the medical system we have. So I'm seething in NY. But Mom was fine. She got the intrathecal chemo and a bone boosting drug that needs to be administered intravenously, so it wasn't a wasted day to her. Plus, after that was all done, they went to radiation and were out in 15 minutes. And Dr. C.'s colleague is about 8 months pregnant, so we know we won't have to deal with her again anytime soon.

In all honesty, I think Mom was a little relieved not to have the systemic chemo today. The side effects are unpleasant and now she's having radiation side effects; best to let her body deal with one thing at a time.

Though all that echos in my mind is that those tumors are still growing...

The good news is that Mom's stomach was much better today. She still felt a soreness, but it wasn't the extreme sharp pain she's been having for the past few days. We'll take any victory we get.

6.6.11

AYNSLEY:
Mom has had a stomach ache for four days now. It seems to be getting worse each day. Yesterday, she mentioned that she was uncomfortable, but still was able to eat. Today, she couldn't eat much after breakfast. Though she still exercised today-she went for a long walk in the hall and did other, not stomach related, exercises.

Dad drove to radiation again today and the treatment went well, but they arrived a little early and had to wait for the appointment time, so it turned into a longer than normal day. Tomorrow is chemotherapy and radiation, so they'll go via ambulance. Tomorrow will likely be a longer and less comfortable, day than today, but I'm hopeful that since her appointments are early in the day, she'll be able to be back in bed by the early afternoon and rest.

Tomorrow she should also be able to speak with the doctor on staff and see what's going on with her stomach. It's frustrating to me that she's been so uncomfortable for so many days. It must be infinitely more frustrating for her.

6.5.11

AYNSLEY:
Thanks so much to everyone who went out today to participate in Race for the Cure in Seattle! The weather was gorgeous, the comradery undeniable and we are all so touched to be the benefactors of so much healing energy.

These charity walks are always so emotional for me. The city streets are closed, and all you can see is a sea of people in matching t-shirts, all of them walking to support the struggle of someone they love. Time magazine this week is devoted to cancer-there are a number of articles about all different facets, from being the patient, to new research opportunities. It seemed clear to me that many scientists are hoping for cancer to become a chronic, and thus manageable, disease. New forms of targeted therapies are being developed in hopes that patients won't have to endure the side effects of chemotherapy and radiation, that only the cancer cells will be able to be destroyed. I hold those images from those walks in my heart. All of those thousands of people. Why do we still not have any cures? Why are we still not able to prevent?

6.4.11

AYNSLEY:
Mom was so exhausted last night she slept through dinner and the rest of the night. I suspect that driving and radiation therapy caught up with her and zapped all of her energy. Luckily, the sun was shining brightly this afternoon, so she was able to recharge. I called Dad in the afternoon and caught him on the driving range (hooray for Seattle sunshine!!), so I called Mom's BFF and caught her on the lawn at the Kline with Mom. I'm guessing they stayed outside for a few hours. Nothing like a little sunshine therapy to replenish vitamin D stores and positive attitudes.

And the weather is supposed to stay lovely through tomorrow, so Flynny Flynne Flynne, The Sisterhood of the Traveling Wool and Team Flynne should all have gorgeous walks and runs tomorrow. Thanks so much to everyone for your energy and donations-Mom is looking forward to a full report after Race for the Cure.

http://www.info-komen.org/site/TR?px=10249174&pg=personal&fr_id=2079&s_subsrc=stream&s_src=boundless

http://pugetsound.info-komen.org/site/TR/RacefortheCure/SEA_PugetSoundAffiliate?team_id=170929&pg=team&fr_id=2079

http://pugetsound.info-komen.org/site/TR/RacefortheCure/SEA_PugetSoundAffiliate?team_id=153536&pg=team&fr_id=2079

6.3.11

AYNSLEY:
The day began well. A great breakfast, a great workout, a nice lunch and a solid nap. The day two of radiation (and day three of driving there)...not so great.

After two days of treatment, sitting in Seattle weekend traffic on the way home was not pleasant. Mom was exhausted, uncomfortable and ready to be back in bed, but traffic had other ideas. As soon as she got back to the Kline, she was down for the count. And then some. By 7:30, she was still asleep and my dad was counting on her good breakfast to keep her belly happy until she woke up and was able to eat some dinner.

So, the driving 5 days a week thing may be reconsidered. Next Tuesday Mom has chemo again, so she'll definitely be transported via ambulance that day. And maybe an additional day during the week, too. Driving in the car is awesome, but needs to be comfortable and sitting up is still hard work. I'm glad she has this weekend to recuperate a bit.

In fantastic, wonderful, beautiful news, Mom could see the radiation oncologist's hand. She was seeing shadows better today than in a long time and as he reached for her, she could not only see that something was coming, she recognized it as a hand. So, once again, I'm asking everyone to say a little prayer, send a little vibe or in some other way visualize her getting her vision back. It would be such a game changer. With her increased strength and stability, having her vision could actually mean some level of independence. She could be mobile and self sufficient in a lot of ways that the vision is preventing right now. And, though this is the pettiest thing ever, she could see the wedding photos. I brought them to Seattle last weekend and it was so sad that she couldn't see them. She looked so damn good, and I think seeing that, and seeing herself, would just be so powerful. So, please, any spare energy you can send her way would be much appreciated.

6.2.11

AYNSLEY:
Radiation went well today! Mom was fine riding in the car both to and back from her treatment and the treatment was very quick. As soon as she got back to the Kline, she turned in for a long solid nap. She'll go back for radiation again tomorrow, and every day for the next two weeks, then a few days into the third week. This coming Tuesday she'll have chemo and radiation, but that will be the only day that she needs to double up on treatments.

The side effects of radiation are cumulative, so if she does experience some discomfort, it won't be until at least next week (we hope). I also so appreciate that the radiation oncologist started on a Thursday; the treatment course is 5 days a week for 3 weeks, but this is such a better way to start out: 2 days on, then 2 days off, then the 5 day stretch. I'm sure Mom will be tired over the weekend and exhausted as the treatment continues. Remember that sitting up is exhausting, so the car rides alone happening every day will wear her out.

6.1.11

AYNSLEY:
The last two days were good for both Mom and me.

Yesterday: Mom: had friends come early in the day so I could take Gary to the doctor, had a nice shower and an intense physical therapy session that was challenging, but didn't leave her sick. Me: Gary tested negative for strep throat (though he still has a really bad cold), we made our standby flight and even got seats together.

Today: Mom: drove in the car with Dad to the radiation oncologist's office for another X-ray and scan to double make sure the radiation will be administered correctly tomorrow, talked to our favorite nurse there and got a good rundown of pre and post treatment advice and generally felt well throughout the day. Me: I didn't have to be at work until noon today, so I slept until 9am. Seriously! Nine glorious hours of sleep. Yum.

Tomorrow will be Mom's first appointment where she actually gets radiation. The last radiation treatment was exhausting and uncomfortable, but this treatment should be much more tolerable. The first round of radiation was on her brain, neck and spine: brain radiation is the most tiring to receive, being in the necessary position was painful and frightening, it affected her ability to swallow (also frightening) and she developed a crazy rash on her chest. This time, the position is sitting up, it won't interfere with her swallow or other facial features and it should be far less exhausting than the last round. Plus, she's SO MUCH STRONGER going into this treatment than she was before. She's driving in Dad's car, sitting upright for at least 30 minutes on the way there, then standing as she transitions to the wheelchair. As opposed to being wheeled in a stretcher, hoisted onto a table and rolled into position.

As we enter June, it's a great reminder of far she's come.