1.6.11

AYNSLEY:
It feels odd to be writing this blog from home. Everything about the past two weeks has been completely surreal-it's like a bad dream. Spending at least 12 hours a day at the hospital for 13 days straight, receiving emails, voicemails, texts and hugs from practically everyone I've ever known in my west coast life made my life in New York seem so distant (though my NY community has been so amazing, too). And now I'm home but the bad dream is still going on. It feels more real.

I was able to spend a great few hours with Mom this morning-I got to the hospital around 8:30 and she and my dad were eating satsumas. Radiation was quick at 9am. I can't say enough good things about the radiation oncology department at Overlake. Our doctor is great-very available and honest. His nurse gave me a big hug before I left, as did one of the other techs, who pulled me aside to tell me what a special woman my mom was. They're just so great. After radiation, we ordered real breakfast-Mom got a delicious ham, egg and cheese sandwich, which she ate about a quarter of. (I know it was delicious because I ate the rest of it-looking very forward to running tomorrow!!) She was in good spirits, awake and alert and not in pain. We were able to have a few minutes just the two of us before I left; it was a conversation I'll treasure my whole life.

Then I was on an airplane for five hours. I was so afraid I would miss something important, which of course I did and will continue to do. This afternoon she had a very scary episode of shortness of breath and chest pain. An EKG was done and came back okay, pain meds were given and she was fine by the time I spoke to her around 7:30pm. But still. She told me it was really frightening, but thank God my dad was there to help. That made my dad's day. She's in an ultrasound exam now, having her legs checked for blood clots; I'm assuming this is to assess her readiness for surgery tomorrow.

Tomorrow is going to be insane: in addition to radiation in the morning, the surgery is to implant a porta-cath, which will allow her to receive IV medications through her chest instead of her arm. Then a PET scan to see how far the cancer has spread (with the main concerns being the lungs and the liver), then chemo. I feel horrible that I won't be there for this-her chemo headaches are a bit rough and seem to get better only with a head massage. I know Ross and Dad will do a great job with this, but it's hard to let go. Also, the family time we had before her first surgery was so amazing that I'm sad to miss out on it again. Though this surgery isn't as intense as the last one (it's not brain surgery!) and my understanding is that she won't need to go under general anesthesia again.

Also, I'm afraid of the PET scan results. If it's bad news, I won't be there to hold her hand and discuss all the options in person.

But truly there is no good time to go. And as hard as it was to leave, it's so good to be home. Kissing Gary was everything I was expected. Knowing that I'm going to work tomorrow feels great-so normal. I will of course have my phone glued to my side. I take comfort knowing that I can always fly back and be there within 12 hours. I told every member of my family that while I have my return ticket three weeks from today, if anyone wants or needs me there sooner, I'm there in a heartbeat.

Requests and Blog Comments

AYNSLEY:

An open thank you note to everyone who has gifted us with cards, baked goods, food, laundry services, meal delivery, emails and stories: THANK YOU SO MUCH! We are not going to get around to writing thank you notes for quite some time, but please know how much all of that has meant to all of us.

REQUESTS:

If you want to bring anything by the hospital, Mom is requesting the following:

• little fruit cups: pears, peaches, oranges, etc in water.
• juices/smoothies: grapefruit, mango, mixed fruit (100% fruit please)
• soda: ginger ale, root beer, lemonade, cream soda

Please don't take this as any slight on what has already been delivered-she has thoroughly enjoyed every single thing that has been dropped off, but she only eats a bite of cookie, and then I have to finish it. Also, don't go crazy. Don't feel compelled to bring or send anything-truly the best gifts have been all the love and caring.

BLOG COMMENTS:

I've gotten a lot of feedback that people are having trouble posting comments on the blog. I'm sorry. Beyond clicking on the "post comment" button, I can't help you. For specific tech support, I recommend asking your kids or nieces and nephews, or any 8 year old you have access to. Feel free to send me emails at aynsleykirshenbaum@gmail.com I read them all to Mom and it's just as good.

1.5.11

AYNSLEY:
I was at the hospital for the past 36 hours. The bad news: I slept 3 of them. The good news: Mom slept a lot more than that. Our night was rough-we were up at 12am, 1am, 2:30am and 5am. I stayed up then, but Mom was able to fall asleep again around 6 and sleep until radiation prep at 8:30. We were up all night because she had a horrible stomach ache-it was so sad. And I'm a heavy sleeper, so I'm sure she called out to me a few times before I woke up each time-I decided at 5 I couldn't do it anymore. She fell back to sleep and I rolled out the yoga mat until I had a work call at 7am-PST vs EST-man, what a challenge!

She had a longer than usual radiation treatment at 9:15 and I was very worried about her comfort. There are always three radiation technicians helping with the treatment and I mentioned her upset stomach to them. I also insisted that they give her a signal in case she needed a break. They couldn't shorten the treatment, but as soon as we were done, all three of them literally ran to Mom's side to get her off of the uncomfortable treatment bed. Little acts of kindness like this, coupled with lack of sleep, made me extremely weepy all day. I also asked one of the technicians if they treated this kind of cancer a lot. "Oh, yeah, all the time. We're treating someone right now who has the exact same thing." "As young as my mom?" I asked. "Younger."

And my heart broke again for this stranger, who maybe has little kids at home, who also has to endure this pain, this disruption, this fear. And as sorry as I'm feeling for myself, I know how so very lucky I am to have had 30 amazing years with a healthy, vibrant mom who has always been my loyal ally. I know how much the past two weeks have been a gift; when I first heard her diagnosis, I prayed so hard that I would get to have just one more coherent conversation with her. And I've had SO many. I've been able to tell her so many times how much I love her and I've been able to hear so many times how much she loves me. She's teased me, inspired me, awed me and taught me so much about faith, grace and love. And I get to be aware of those gifts and appreciate them.

I am going home tomorrow. I am terrified and relieved at the same time. I need to sleep in my own bed, exercise for over an hour, kiss Gary, do work. I also know that my heart and mind will constantly be in Seattle, feeling guilty for leaving my family and scared I'm missing time with my mom. I will be back in three weeks at the latest , though I plan to continue the blog from NYC-it will be posted earlier in the day, though, and some information will be second hand.

Anyway, despite the rough night, the afternoon and evening were amazing. Mom slept hard as soon as we got back to the room after radiation until 12:30. When she woke up, she felt so much better and was in a great mood. She ate well. She picked on my dad. She and her friend told their favorite stories of each other's kids when they were little. She had a fantastic physical therapy session, walking farther with the walker than she has since she arrived. And best of all: she's off the IV! Her pain is so much better that she's just taking an oral morphine twice a day. She even skipped her pre-radiation Tylenol and felt fine afterwards.

The sad news is something I alluded to yesterday: her hair is falling out. After the shampoo, I noticed a lot of strands on her pillow. When she leans against me, she leaves hairs on my shirt. When I run my fingers through her hair, massaging her head, my fingers leave wrapped in her hair. Yesterday was probably the last shampoo she'll get. The hair loss is from the radiation and is permanent. She has already amassed an amazing assortment of hats and head scarves-all gifts and all gorgeous or hilarious (my favorite is a yellow fleece hat with frogs on it-a nod to the Kermit voice), but it's sad to see this side effect taking hold. She doesn't seem too upset by it; I'm not sure if she really knows and she's so focused on wanting her vision back that anything else is minor. Today we were showing off her quilt again and I said that I was so excited for her vision to come back so she could see it. She replied that all she really wanted to see were her children again. My heart was about to break again when Dad chimed in, "don't you want to see me?" And she said,"...ummm, yeah, I guess." It's amazing how laughter repairs all those heart fractures.

1.4.11

AYNSLEY:

Today was beautiful.

My parents got a great night's sleep, thanks to our amazing nurse, G, who orchestrated the night nurse's rounds and made sure no one was interrupted. Radiation was quicker than planned, with the long mapping procedure postponed until tomorrow, and Mom came out of it with an appetite and a smile on her face. We had a great shower and shampoo; I didn't flood the entire bathroom and took my pants of prior to getting in. Mom's oldest friend (in years of friendship, not age) arrived from AZ, bringing Mom such joy, blessings and amazing apple bread. And Mom was presented with a gorgeous healing quilt, knitted by a whole host of visitors in the waiting room. Gary dubbed them "The Sisterhood of the Traveling Wool." Though she can't see the beautiful colors, she can feel the warmth and softness and prayers that have been woven into it by the 19 people helped bring it into existence. The first time I've seen Mom cry since this whole ordeal began was today when being wrapped in the quilt, and they definitely weren't tears of sadness.

I arrived at the hospital at 9am just as my parents were heading down to radiation; my dad was elated with the night. They slept all the way through until about 5am when Mom needed to go to the bathroom. They spent the next two hours talking about their life together and the neighbors and friends who all raised their children together. They feel asleep again until 9 when they got up for radiation. I walked downstairs to treatment with them and we all had a great breakfast afterwards. Mom ate the most today that I've seen her eat. She had about a quarter of a bagel with cream cheese, capers and lox for breakfast and about 4 ounces of pumpkin and lentil soup for lunch. Claudia brought her a mango smoothie that she lovedand had for dinner with a few bites of chips and a bite of bread. After breakfast, Mom still had high spirits and energy so we decided to do the shower. It was great-she felt so refreshed, so clean, so human again. Since her surgery incision still hasn't healed, G wisely wouldn't let me wash her hair in the shower. So we moved to the sink and I shampooed/massaged her head for a while. If she were a cat, she'd have purred. It helps that she also didn't see the large knot of hair that came off her head and settled in the sink. Or the pile of strands on her pillow.

We had a visit from the hospitalist today. We actually have two hospitalists-they work 7 days on and 7 days off. Our first one is really great but the second guy is ridiculous. Today was second guy's last day, thank goodness. As he was leaving, I said to Mom, "I'm going to describe your doctor: he has a long ponytail, a mouthful of braces, glasses that don't fit his face, a slouch, a huge peace sign belt buckle and one of his shoes has white shoelaces and the other has brown." Not that any of those things have anything to do with his ability to practice medicine, but when your mother has a fatal disease, you don't want the doctor who'd rather be at Phish than at your bedside. After discussing getting Mom off the IV pain killers by administering an oral morphine every 12 hours, he left and said #1 will be back tomorrow. I very thinly veiled my glee. The idiot then put in the order for the pain killer every 12 hours, but gave it to her at 2pm. We're in the process of moving it to 9s or 10s instead of needing to wake up at 2am to do this.

After a super eventful morning and early afternoon, Mom napped on and off until about 5:30pm. Ross arrived and my dad and I rotated to the waiting room to visit with aunts, uncles, cousins and friends. At one point, Dad went back to the room, then immediately came out to the waiting room with a big grin saying that Mom and Ross were napping together. The rest of the evening is a blur: Mom's friend arrived, the oncologist came in to do chemo treatment #2, Ross played guitar for Mom, Claudia brought smoothie and soup, my dad went home for the night, everyone else went home for the night, I brushed Mom's teeth and did my best to get her comfortable in bed lying on her side.

It's another slumber party tonight-my dad is going to work tomorrow for the first time in over two weeks. I'm looking forward to the 5am conversation.

1.3.11

AYNSLEY:
I don't know who sent us blueberry muffins this morning, but you saved the day. First of all, they were delivered around 8:30am, which woke us up in time to find out that radiation was scheduled for 9:15am. Knowing what happens when we're rushed before radiation, I immediately told the nurse we needed a pre-funk pain med cocktail. We also needed breakfast. Hallelujah again for the blueberry muffins-Mom ate half of one before gulping down her pills and heading down for radiation. Open call to the Blueberry Muffin Hero: who are you?? Thank you!

I know some of you are wondering how the slumber party went. I woke up at 1am when Mom's infusion bag needed to be changed, but luckily she slept through it. At 2:30am, she woke me up to help her pee. But she's so used to having my dad there, so was calling "Bob! Bob!" and it took me awhile to wake up and respond. I felt horrible. She was fine, though, and said she wasn't waiting long. At 5:15, we were woken up for vital signs, medication and a blood draw for the lab. The lab draw was actually the first thing at 5:15, then vitals, then meds. At about 5:45, another tech came in telling us they needed a lab draw and I said they'd already done one, please go away. This little waking period was the highlight of the night. Mom was alert and talking about her dreams (being in the mountains with a bunch of little kids) and singing the song my dad made up for me when I was born. I think it was the first time since then that we'd spent the night together in the hospital. We both fell asleep again until the muffins arrived.

My dad is spending the night tonight again, and we made arrangements with the night nurse to only come in if summoned-there should be NO 1am infusion change (we changed the bag at 10pm to make sure), there won't be any 5am hubbub unless Mom causes it. Hopefully they will both get a good night's sleep.

Today was hard. Mom was exhausted following radiation and didn't get her groove back until about 9pm. We had a frustrating meeting with the oncologist, who couldn't really tell us anything. We seem to get a lot of "maybe" from our doctors. We had an ultrasound that should have taken 20 minutes take two hours-that's two hours off her pain medication, with cold goo on her arm and neck-because the technician was clearly inept. I was so angry and so helpless.

Last night as I was telling my mom the agenda for today, I said she had radiation and she groaned. I reminded her that if she EVER doesn't want to go, if she needs a break, if she wants to stop, tell any one of us and we'll stop. We'll take a day off, a week, whatever she needs and wants. She just shook her head and said this is what she needs to do to get back to normal life. All she wants is to go back to the mundane and it breaks my heart that I can't get her there. In the course of three weeks, she's gone from a vibrant, strong, fit and healthy woman to someone who can't see and can't stand. Anyone in their right mind would be devastated. I am devastated. And she sat with friends tonight and planned her birthday dinner (January 30th, folks!), when I'll be back in town and we'll go for Italian. To bear witness to such hope is an amazing gift.

1.2.11

AYNSLEY:

It seems that whenever I'm sure of a good day in store, I get taught to never assume anything and to savor the realities instead of the should-bes.

Today was rough. Last night, my parents were woken up every 90 minutes for something: pills, vital signs, bathroom trips, etc. By the time I arrived at the hospital at 11am, they were both exhausted and worn. She had gotten one bite of breakfast in before the nurse insisted she take her pills and by the time that was over, she had lost her appetite. The only thing she ate all day was a few bites of my lunchtime mashed ginger yams (have I mentioned the hospital is directly across the street from Whole Foods?? Best Thing EVER). And since she didn't really get much sleep last night, she slept most of the day. Which was great for her-I'm hoping tomorrow she'll be rested and ready for radiation and her second chemo treatment-but she had a ton of visitors and I had to be the bitch and keep people out.

an aside:

I know that I have designated myself as the information provider, the visitor gatekeeper and the contact go-to for everything, and I wouldn't have it any other way. I'm a control freak. I realize that I have specifically asked all of you to email me messages to Mom to pass along and text me when you're in the waiting room so I can see if Mom is up for a visit. And I definitely think that is the best system for all of us right now. But please remember that I am also a grieving daughter. Up to three weeks ago, I still called her every time I cooked meat to see how hot to set the oven. I sent her photo texts of outfit options before deciding what to wear to interviews and Rehearsal Dinners. ( I can't pick out my own clothes-practically everything I own is from a shopping trip with her because she has fantastic taste and I have no concept of what looks good on me). So, if I don't reply to an email or text from you within a few hours, if I basically hang up on you if you call the hospital, if I can't sit with you in the waiting room or don't want you to touch me, that's why. I'm trying to wrap my head around this diagnosis, this enormous wrinkle in daily life. I'm trying to live with constant uncertainty (as I said, I'm a control freak-this is NOT easy), with fear, with sadness. I'm trying to limit the pain that she's in, always; protecting her the best and only ways I know how is priority number one.

Anyway, today had it's ups and downs. She had a fabulous physical therapy session that involved walking with a walker the entire length of her new, huge room (and back!). But she was really tired when she began the session and just exhausted when it was over. She never quite got her energy back today. Though it's undeniable that her body is stronger today than a few days ago. It is also with mixed feelings that I announce the departure of Kermit. Mom's voice is getting back to normal, which is an excellent sign overall, but a little sad, just because the Kermit voice is so awesome. Oh, well; Ross does a pitch perfect impression, so be sure to ask him for it when you see him.

The best thing about today is yet to come-I'm staying overnight with Mom. My dad got some very special advice from a very wise woman and consented to let me and Ross take some turns on the overnight shift. So, it's a slumber party! Of course, I'm hoping that she'll sleep all night and really rest up for an eventful day tomorrow, but I'll be very happy to be here should she wake up and want to talk, or just want a back rub.

1.1.11

AYNSLEY:
Happy New Year! Today was a magical day. In addition to the perfect balance of ones in the date, Mom was leaps and bounds better. She had significantly more strength in her body: standing (with assistance) without shaking, moving her legs on their own, pulling herself up with her arms, lifting and holding her head off the pillows. She had a wonderful physical therapy session and sat in a chair for about a half an hour before going back to the hospital bed. She didn't need ice packs on her neck or lower back. She took two awesome, uninterrupted naps. Her appetite was good, her energy was good and her mood was...well, she oscillates between sweetness and persnickety.

She got a phone call from a dear friend and was so happy to talk on the phone, she got a visit from her rabbi friend and was so happy to describe her personal philosophy of healing within a support group (ripples like a snail's shell, starting with just immediate family and extending more and more until hundreds of people are joining in and praying together), she got a great massage and was so happy to learn to stand up from bed on her own. And then she was a bit annoyed with Dad for not helping her brush her teeth. And a bit annoyed with me for pushing her to eat when she wasn't hungry.

I take the annoyance as a super good sign. I feel like she's starting to feel more normal in her body and doesn't want to have to stay in a hospital bed-she's such an active person and it's frustrating to hear that the sun is shining and the mountains are out and she can't enjoy it. In my mind, if she was still in so much pain, she wouldn't care-she'd simply keep hitting the pain button and drift off into sleep.

When I spoke with Gary for our mid-afternoon check in, he reminded me to enjoy the good days. That really resonated with me. There will be more bad days. There may be many more bad days than good days. There may be days when we all lack the strength to get out of bed, to stop crying, to face the world. But that wasn't today. Today I held my mom's hand as she slept, rubbed her back as she sat up and massaged expensive face cream into her temples. Today we laughed as she regaled us with stories of her sorority sisters, today we enjoyed amazing cookies baked with love by a coworker, today we sang AMEN and meant it with the Mi Sheberakh.

Soon I will have to go back to New York and that will be a difficult transition. I'm hesitant to make plans and appointments, especially professional ones. I'm paralyzed with wedding plans-should I book the DJ or cancel the venue? How will I adjust to being needed in two different places? I can't know and can't make any decisions right now. I just have to take Gary's advice and enjoy the good days. Like today.