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.

12.31.10

AYNSLEY:

Today was a marathon day. I arrived at the hospital at noon and Mom was about to start her first chemo treatment. She had already had radiation therapy and a diagnostic test to determine if the Ommaya port was working. Immediately following chemo, the speech pathologist came in to check in on her swallowing and to see if she was having trouble eating. Then the opthamologist came in to test her eyes. About 30 minutes after he left, a physical therapist came in and did 20 minutes of physical therapy. For those of you counting at home, that's 6 treatments before 3pm.

The diagnostic test showed that the Ommaya Reservoir was working exactly as it should, thus allowing her first chemo treatment. The entire treatment takes about 10 minutes and can be done in her room. Because it's administered directly into her brain, she shouldn't have any side effects besides a headache (which she did get later on today).

Her swallowing is much better, which makes her feel like she can breathe easier. Eating and taking pills still isn't super comfortable, but it's better than it was earlier in the week. She also figured out that eating hot foods hot is easier than if they've cooled down to room temperature, so we make sure that we have her meals as warm as possible; this makes chewing easier for her.

The opthamologist determined that her eyes are great-the pressure is where it should be and the optic nerves are functioning well. That means that the blindness is due to something going on in her brain-his best guess is that the cancer is interfering with the brain in some capacity. He suggested an MRI of her eyes to see what's going on and ordered it for today, but when they came to take her, I didn't let them do it. She was completely exhausted from the other 6 therapies, the MRI is really uncomfortable for her and the treatment course probably won't change no matter what the results are, so I asked them to postpone (at least postpone and maybe cancel-I want to talk to the hospitalist about it more).

The physical therapist had her sit up in a flat bed, then get up to standing while bracing herself in a walker. This should build up her strength and balance. Unfortunately, PT was the last thing on the agenda and her body was just too tired. I mean, she did great, but she would have done much better had that be the second or third thing of the day. The PT gave her homework: leg exercises to do in bed every hour. She also suggested that we move to a larger room with a chair in addition to the bed so Mom can spend some part of the day sitting upright. We switched rooms tonight, so we'll see how that goes. I think both my parents will be happier in their new digs (or as my dad called it, his "new crib").

The last day of 2010 had Mom was feeling nostalgic. She asked us what all had happened in 2010, musing that it didn't seem like a particularly eventful year. I piped up that I got engaged in 2010 and she sort of waved it off, like, "oh, yeah, big deal." Ross chimed in that he started at UW and got on the Dean's List his first quarter. She perked right up at that and said that was an exciting thing. When I protested that getting engaged was at least as exciting as getting on the Dean's List, she shook her head and said, "Well, you've had a boyfriend since preschool." Then she smiled her teasing smile and said that she was very happy that I found someone who I wanted to spend the rest of my life with. We had a little NYE celebration in her new large room. Mom said that she intended to stay up until midnight, hootin' and hollerin' and jumping up and down. We figured 10:45pm was just as good and about 12 of our closest friends gathered in her room to count down 15 seconds and yell "Happy New Year!"

She didn't jump up and down, but she hooted and hollered and said she was in the perfect place for a party. And really, she's right; any place filled with that much love is exactly the place for a party.

A message to our visitors and potential visitors

ROSS:
I cannot thank all of you enough for your support. Your presence in the waiting room, and comments on this blog mean so much to my mom and my family. It is unbelievable, and I cannot describe your impact.

That being said, we are making a system for people wishing to visit my mom. We have decided that we would like people to let us know before they enter her hospital room. Please wait in the waiting room, and call or text my sister if you arrive and no one is out there 347-392-9116 (Aynsley knows about this, I am not just playing a mean joke on her). You can also text me or my dad. PLEASE understand that if you are someone that has dropped by in the past, THAT IS COMPLETELY WONDERFUL! We're not trying to be passive aggressive or anything like that. This is not directed towards anyone in particular, we're just trying to create a system where we can have visitors at the best time for my mom. The truth is, there have been a lot of people that have just dropped in the room to say hi to my mom. And honestly, the fact that people have done that is really comforting to me. I am glad that people are so eager to see my mom and I do not regret how casual our stay in the hospital has been.

Part of our decision to create this system is due to the fact that my mom is starting chemo soon, and she needs her rest, and she gets excited when people come in. Part of it is sometimes a nurse is in the room and they need to get their job done and get out. Part of it is that Aynsley and I want as much family time with our mom and dad before Aynsley leaves for NY and I start school.

I don't want to discourage those of you who have not made it to the hospital yet, or those of you who are on the fence about coming to visit. If you are considering a visit, please come. It means so much to us.

I really want to stress these points: a) this is just an attempt to bring visitors in when they are best for my mom, and b) the fact that we even need to create a system like this is the greatest thing about all of you. Your dedication to my mother, your eagerness to see her and speak with her, your presence at the hospital, your comments on this blog and the mere fact that you are even following this blog are all reasons why we love you more than we can say. And they are the reasons why she is going to get stronger and healthier. You are the reason she will have the strength to come home and continue on with her beautiful, blessed life which you all fill to the brim.

I cannot thank you enough for that. Love.

12.30.10

AYNSLEY:
From my perspective, today was a great day for Mom. I arrived at the hospital around 11:45am after dropping Gary off at the airport (less tears this time around, though not by much) hoping to make it in time for her chemo treatment. When I got there, Mom was totally awake, alert and snipping at my dad. It reminded me so much of the normal married bickering that occasionally erupts in their speech and I took advantage of the fact that she is pretty much blind to double over in silent laughter as my dad sputtered his defenses. Then she told him he was being too defensive. With a smirk and a twinkle in her eye.

Chemo didn't end up happening today-the oncologist was concerned about swelling near the implantation site and wanted to have it looked at before using it. It was a tense 45 minutes in the waiting room for us, though-the procedure was supposed to take 10 minutes and 45 minutes later, we were still waiting. Mom was totally fine, even a bit relieved to have the dressing off the wound. She kept itching it, which she gleefully said "freaks out" my dad. She had a CT scan of her head to check on the surgery recovery-we should have the results tomorrow.

As we were leaving the scan room, she thanked all of the technicians for their help, then yelled "Happy new Year!" I think that she is 100% aware of how freaking cute she is. She's milking the Kermit voice, the oversized PJs, the fact that she knows all of the nurses and technicians, for comedic effect. Dad said a nurse told him they all request her room and I believe it-she's a doll and there's always someone else in the room to help. But in addition to the sweetness, she also has some amazing zingers. Today as she was about to fall asleep, my dad commented on how cute she was. Another friend agreed, "like an angel." She quips from bed, "an angel with a shaved head!" without missing a beat.

But I digress.

It was a good day because it was the first day without ice packs on her neck and lower back. It was a good day because she ate a quarter of a real tuna sandwich with pickles and lettuce that she held in both hands. It was a good day because one of the nurses who has worked with her on and off for the whole week pulled me aside in the hall (he wasn't working with her today) and told me she's getting stronger. It was a good day because an amazing friend of mine who has some experience visiting people in hospitals asked her point blank how she copes with everything and Mom told her: "Every day I set an intention. I knew I needed to get my strength up and to do that, I had to eat. So I decided to get my appetite back. It's a vicious cycle, but I take it one day at a time, fighting as hard as I can." My friend then pulled me aside and said that she was shocked by how clear Mom is-despite being on medications that take two pages to list, she is lucid and fierce.

Goals for tomorrow include having an opthamologist look at her eyes. We all feel that it's not normal to go blind in four days and the doctors were talking about doing an MRI to see if the blindness is a result of the cancer spreading to her eyes or optic nerves or if it's a byproduct of the cancer already in her spinal column. I'm not sure why anyone would do an MRI before seeing an eye doctor-the MRI is really uncomfortable for her and she's already had two in the last week. We also want to increase her rest time-today was another busy day with procedures and LOTS of visitors. Tomorrow she will probably be having two if not more doctor visits (and maybe chemo, too) in addition to her radiation and needs to rest.

Thanks to everyone for posting comments on the blog, sending me emails, sending me and Ross and Dad texts, etc. We continue to read everything to her and she gains strength from you.