1.31.11

AYNSLEY:
Farewell January. We really are approaching Imbolc and the very beginning stages of the first thaws. Though of course everyone east of the Mississippi is calling "bullshit" on that one. And tonight driving home I kept my gloves on in the car. But still, we do know deep down that winter is drawing his final breaths. And the promise of spring surrounds us.

Mom's marijuana is definitely kicking in. Today she took a slice of apple and sighed with pleasure. "This apple is amazing. It's amazing, Ayns! It has so many flavors going on, it's crisp and it's juicy. Oh, wow!" Umm, yeah. To be fair, this was also after her second systemic chemo treatment, before which the doctors pump her full of medications that leave her manic, loopy and hilarious. But really, she sounded like a stoned teenager. She ate so much food today-all of her cream of wheat and peaches for breakfast, half an egg salad sandwich and chips for lunch, a few bites of apple, scone with jam, tuna salad, chocolate, taffy, chocolate chip cookie and juice for a snack and lots of soup for dinner. She was wide awake and alert all day, finally calming down for a nap around 4pm, and then she only slept for about an hour and a half, tops. I expect that she'll have a bit of a medication hangover tomorrow, in addition to being wiped out from her second systemic chemo treatment.

The good news about her treatment is that she only has to leave KG once a week. Due to cancer vacating her CSF, the intrathecal treatments have been cut in half, to only once a week. And the systemic will go on a two weeks on, one week off rotation; today was week two, so next week she gets a rest and only has to have the CSF chemo treatment. Her oncologist has also decided that she should go to the Bellevue Group Health oncology treatment center for her treatments, which I'm stoked about. It's adjacent to Overlake (and thus across the street from Whole Foods) and a really nice and quiet facility, with very easy parking. With this new development, I may be able to go home for a little while and feel okay about it; I know what the plan is for the next few weeks.

Just for the record, some people have been asking, Mom has triple negative breast cancer. I'm sorry if that wasn't communicated previously, but that's the diagnosis. It hasn't officially been staged, but it's my understanding that it's Stage IV, based on the way it spread and where it is now.

And now, some requests:

• I haven't mentioned this in previous posts because I'm terrified to jinx it, but Mom has been having some visual sensory episodes. She can sometimes see shadows and can tell if there's been a change in the light in the room. Today she said she saw the sunshine. And she saw me standing in front of her the other day (she thought I was a wall). So, the next time you think of her, if you could send a prayer, vibe, image, whatever, focusing on her regaining her vision, we would all be eternally grateful.
• Please please please, NO MORE baked goods! I know everyone wanted to send treats for her birthday, and everything she has received is amazing and delicious. But we're at capacity. There's a huge drawer filled with snacks that we're going to have to throw away in the next couple of days, and that's very sad. So if you're thinking about baking, put that energy into Mom regaining her vision instead.
• Please respect that the past week has been very hectic and that we may not get a chance to reply to emails or texts. If you haven't gotten confirmation of approval to visit, please don't come. If you need to plan a few days in advance, that's not going to work for her-we don't know exactly what time her therapies are and we don't know when she'll need a nap or a shower. I'm not trying to hurt anyone's feelings, but at this time, support from the periphery is more meaningful and helpful.

I need everyone to understand that she is very sick and is undergoing heavy duty treatment. Her rest is a crucial aspect to her recovery.

1.30.11

AYNSLEY:
Today we reached milestone #1. That awful first week in the hospital, the first time that Mom became disoriented, she started worrying that she wouldn't make it to celebrate with her "birthday sister" ( a dear friend who also celebrated her birthday today-Happy happy birthday RRG!!). My dad strongly told her that she wouldn't miss it, and Mom snapped back to reality and focus, but it shook us. It terrified my dad. But she made it to today. She's beginning her 57th year on earth and we're very glad to have her.

Gary's and my wedding is milestone #2. It's very difficult for me to broach the subject of our wedding because I know it's something that she's shooting for and working hard to be at. But neither Gary nor I want the wedding we were (ok, she was) planning. But I don't want to take away a milestone for her. Especially after seeing her today.

This morning Mom had physical therapy; it was a session like no other. Usually she does some leg exercises while sitting at the edge of the bed, then walks with her walker for a bit, then sits upright for an hour. Today she did the leg exercises, then walked down the hall into the "gym" and got on the recumbent bike for 13 minutes. 13 minutes! I have some clients who are healthy who would struggle with that! But she did it. Once she got back to her room, she napped until it was time to get ready for her birthday dinner. We had about 50(!) of her closest friends and family come over for pizza, salad and cake; we knew she was going to be sitting upright for at least an hour and it would be chaotic, so we wanted to make sure she got rest while she could. She slept most of the afternoon and woke up an hour before the "party" to wash up, get dressed and get ready to go.

Everyone kept saying how good see looked, how rosy her cheeks were and how happy she seemed. And it's true; she was decked out in a brand new Lululemon outfit and a gorgeous cashmere hat (all gifts-what amazing friends she has!) and she was thrilled to have so many people there. After we sang Happy Birthday, she gave a little speech, thanking everyone for being there. She said, "the best part of this whole thing is getting to spend so much time with all of you. All of my life I've been go go go, and now I really have the time to spend with the people I love. This has been a very special time in my life." It gave me pause. I also am go go go. I moved to New York because the Seattle pace was too slow for me. I thrive on being busy, on racing from one appointment to the next, on working six days in a row and waking up early to get a run in before the work. Mom has been robbed of her eyesight and strength and she appreciates it. She recognizes that all of our time together is precious and has truly enjoyed the knowledge that this situation has knitted our family closer together. Saying that this is a special time...who would ever think such a thing? This is one of the most frightening diagnoses to get, this is the most helpless she's been in her life since infancy, this is a time of such uncertainty and helplessness...and yet. She says it's special. And it is. I watched other families sitting in the waiting room at the hospital fall apart. I watched a son and mother engage in a screaming match. I watched siblings sit in stony silence. And I watched our family (and I include our friends in this group) knit, fold cranes, cry together, hug each other, feed each other and just rally. I mean, we planned a little birthday dinner and had 50 people come. There was no way to cut it down-every single one of those guests have been instrumental to getting Mom to this day. To milestone #1.

Before getting dressed for the party, Mom and I did some bed yoga and massage. She told me that she always trusts that I'm going to help her get in exactly the right position and apply exactly the right amount of pressure. Then she started to cry. "I want you to know how very proud I am of you. No matter what happens, please know that. And that I love you. I love you more than love." I didn't cry then. I just thanked her. I told her that it was her birthday and she shouldn't be giving me the gifts. Because what could be a better gift than going through life knowing you're loved more than love?

1.29.11

AYNSLEY:
First, a correction: The facility where Mom is staying has meals on a 6 week rotation, not a weekly rotation. So far, she's only really had one meal that she wasn't super excited about, so we're hoping that we only have to supplement a little bit with outside foods. Sorry about that!

I almost wrote "today was a good day" but am trying to let the lessons I've learned sink in at least a little bit before I go back to old, familiar bad habits. So: no judgement, just reporting. Gary and I arrived around 11:45am-I had work that I had to do at 9am this morning, so we didn't leave the house until close to 11am. Then we had an essential Starbucks stop for Dad and a bit of traffic, so we arrived right about the time Mom was being served lunch. But the breakfast report was that she ate much more than yesterday-the marijuana may have kicked in. She ate well for lunch, too. The two of us did her occupational therapy upper body exercises. She napped a lot today, had a really strong physical therapy session and seemed more comfortable than yesterday.

We actually had a wonderful time with just family today. Most of our regular visitors are saving their visit for her birthday tomorrow, so we got a lot of quiet time. This is in no way an insult to the fabulous visitors or meant to discourage people from coming. I'm just saying that there was something very nice about having a couple of hours with just Mom, Gary, and me. Gary and I introduced Mom to Michael Buble and I had a little dance party-I know, I know, I'm a total nerd and probably shouldn't admit this, but damn it's fun to dance to him! Later tonight, Ross put on Sam Cooke and all five of us had a singalong/dance party, which was amazing. Watching Mom bop her head along to the music, while Dad and I twisted and Ross and Gary sang along was...well...it made a very happy memory. We laughed a lot today.

I'm not sure how much detail went into describing the bottle garland, but each of the contributors wrote a little saying or quote for Mom. Gary's was "where there's laughter, there's hope." And it's true. If you can find humor in sadness, if you can laugh as often as you cry, if you can not only find, but focus on, the positive side of any situation, that's quality of life. That's really living. We have a lot to hope for. Of course we're all hoping that somehow a medical miracle will occur and Mom will do the impossible and go into remission. Of course we're hoping that her vision will return. We hope that she'll get her strength back and maybe someday be able to participate in some of the things that she loves about life: riding her bike, wind surfing, yoga, dancing, swimming. But even if none of those big wishes are granted, knowing the joy and healing that come from sharing laughter with people you love makes that the best thing to hope for.

1.28.11

AYNSLEY:
I feel like everything throughout this process has been one step forward, two steps back. I have a hard time seeing things in aspects other than absolutes-things are either fabulous or horrendous. We're now settled in to the KG Home and while the staff is amazing and Mom's care is much more personalized, it's undeniable that she's exhausted. Plain and simple. She ate a few bites only of breakfast today, about half a cup of soup and a few bites of veggie pizza for lunch and another half a cup of soup for dinner. She has been drinking milk and a good amount of it-it seems to be the perfect consistency for her swallowing difficulty and she likes it. Plus, it's nutritional calories instead of simply sugar calories like juice and soda. But still, her appetite has been very diminished since we arrived and it's concerning. Though it could be due to the lack of marijuana-we didn't get it until dinnertime tonight, and she hadn't had it since leaving Overlake. She's been saying that she doesn't think it's doing anything, but I pointed out that on it, she could eat an entire bowl of cereal whereas today she only ate a few bites. She conceded that maybe it's working after all.

In addition to the poor appetite, the fatigue really bothers me. She has been sleeping a LOT, maybe twice as much during the day since we left Overlake. We're all pretty sure this is due to the Taxol (systemic chemo), and normal, but it's still very scary for me. She looks like a cancer patient. She's lost about 25 pounds (and I have managed to find at least a few of them-I must be the only person in history to gain weight during her engagement!), her muscles have wasted, her skin is burned from radiation, she's lost her hair, she's aged about 20 years in the past 5 weeks. And when she's energetic, it's easy to overlook all of those things. But when I sit next to her, watching her sleep for hours, it's heartbreaking.

So, I viewed today as a bad day. She was a bit uncomfortable during the day, she slept a lot and she didn't eat much. She did have a good physical and occupational therapy assessment in addition to a great speech therapy assessment. The staff here is undeniably excellent. She walked a bit and sat upright for awhile (longer than planned when she was interrupted in her wheelchair on the elevator for a fire drill), but still, I don't see those positives as much when I'm in the midst of my version of a bad day.

But I have to learn not to see things in such terms. I need to embrace the shades of gray. And so, in yet another miraculous moment, the universe intervened and taught me a lesson. At 10pm, Dad called me with the results of the lumbar puncture: there's no more cancer in Mom's cerebral spinal fluid.

Let me repeat: there is no cancer in Mom's cerebral spinal fluid

1.27.11

AYNSLEY:
Bear with me, this is going to be a long post. Today was a milestone day: we left the hospital! We are now the proud residents of the Kline Galland home in Seward Park, Seattle. But more on that in a minute.

Last night, we cleared out most of her room (and since we've been living there for a month and we all have a touch of the OCD, there was much to be cleaned!); all that was left this morning was a plant, her clothes, a few stray bottles of lotions and potions and miscellaneous essentials. I arrived at Overlake at 9am, shortly after breakfast had been ordered. Mom mentioned to me how much she was looking forward to her breakfast of cream of wheat with the diced peaches that a dear one had brought for her. Uh-oh. We had cleared out the peaches last night. Dad and I looked at each other, then both sprang into action. I immediately called Ross, hoping he was still at home (he was), but as I did, Dad remembered that the peaches were in his trunk in the parking lot. "I'll run and get them before the cereal arrives," I volunteered, but Dad insisted he go. 10 minutes later, he's back, with a package of pears. "Dad, those are pears." "Isn't that what she wanted?" "Nope, she wanted peaches. I'll go get them this time." But Dad was already running back out the door to fix his mistake. Shortly after he left the second time, breakfast arrived. I mixed Mom's hot chocolate while we waited for the peaches. About 15 minutes went by this time, when Dad ran back in, thrust the package on the table, saying "these look exactly like the one I just brought up!" "Yup, because they are. You brought up more pears." He started to run back out again when Mom yelled from bed, "Don't even think about it! Aynsley's going this time!" So I did, grabbing the peaches (after first grabbing oranges, but realizing my mistake before even hitting the "lock" car key) and running into Ross arriving in the parking lot.

We had a nice morning. Mom got a great sponge bath from a very sweet nursing tech, I took advantage of our last day across from Whole Foods, half of the nursing staff came in to say goodbye in person and tell us what an amazing family we have, I packed up the remaining essentials, Mom got dressed in clothes and we got ready to leave. The transport team arrived-two middle aged men who did shtick the entire time, which amused me and sort of annoyed Mom, which amused me even more. As we were leaving, Mom started to cry a little bit.

We rode in an ambulance to Seattle where Dad met us at the entrance-serendipitous timing. Another friend, our special liaison and advocate to the facility, arrived shortly thereafter and helped Dad with all of the admitting paperwork. I went with Mom to the room and realized we had just entered the Mecca of Jewish grandmothers. As soon as we arrived, we were welcomed with a platter of fresh baked chocolate chip and almond cookies. The main mantra for Mom's care seems to be "eat, eat, eat" which I'm 100% on board with and makes me feel so comfortable. The staff is so amazingly sweet and tender and the facility is clean, warm and welcoming. And we were worried about Mom not liking the food, which is all kosher, but she loved tonight's soup and ate a couple bites of egg dish. And she's looking forward to tomorrow's matzoh ball soup and challah. I think we'll run into a problem after the first week-the menu rotates weekly, but is the same on every day. I don't know how much she'll love the soup next Thursday, or the Thursday after that. There's a co-op down the street that isn't really walkable, but it's very quick in the car, so I'm sure we'll be frequenting that. Frequently.

Tomorrow, she'll move to a private room on the first floor, which is more focused on rehab, physical therapy, occupational therapy and speech therapy. The nursing staff may change, but we've heard very good things about them, too.

Next week we'll begin the new routine: she will go via cabulance to the Seattle Group Health facility where our oncologist works Tuesdays and Thursdays for chemo. Once a week it will be both systemic and intrathecal and once a week only the intrathecal. The oncologist's best guess is that she will get the systemic chemo next week, then take a break for a week to let her body rest. We're very cautious of side effects and they don't want to let her blood counts get too low, which is very common on Taxol. We may go 3 weeks on, 1 week off, but we just have to see how she does. In all honesty, she was very tired today. She fell asleep at 7pm and was still out when I left at 9:30pm; Dad just texted that she was up for about a half hour for meds, but went back to sleep and is probably out for the night.

So far, the only cons I can see for this facility are cons for us visitors: limited menu options, no Whole Foods within walking distance, less ease with visiting (all visitors need a pass, so we need to check in each time we come), no sleeping cot, further away from home, small parking lot, no real waiting room. No cons at all for Mom. And the pros are tenfold, so it's really a no brainer. We're very happy to have her out of the hospital.

Now the best pro of the day for me: Gary arrives tomorrow! I'm very excited to have all of the people I love best in the same place on Sunday for Mom's birthday.

1.26.11

AYNSLEY:
According to my mother, I am an over-empathizer. That was her explanation when, last night at 3am, I nearly fainted right after she threw up. It was really her first time vomiting since all of this has cancer business started; it was bound to happen sometime. Why not the night I'm there? The nausea was short lived and we were both able to fall back to sleep around 4am. When the morning nurse arrived at 7, we told her that she had vomited last night, and the nurse gave Mom some anti-nausea medication. It knocked her out for the whole morning, which wasn't necessarily a bad thing. Mom slept SO much today, it was really great.

Today was Mom's first treatment of the systemic chemotherapy, Taxol. Before the treatment, she had a lot of other medication: more anti-nausea, the medical marijuana (which Mom swears isn't working in between bites of ice cream), anti-histamines, pain medication, anti-biotics...I'm sure even sure what else. It's kind of amazing how many medications she takes these days when two months ago she would take half an Advil only in dire situations. The Taxol itself took about 3 hours to administer via slow drip into her chest port. While that was going on, she also had her intrathecal chemotherapy. The oncologist wanted to take a sample of her cerebral spinal fluid from her Omaya reservoir to see if there had been any reduction in cancer cells since beginning that treatment about a month ago. But when he tried, he couldn't access any CCF. So he tried again and again, failed both times and decided to call the neurosurgeon who put the port in. The only other way to access the CCF is through a lumbar puncture, aka spinal tap, which is what ended up happening this afternoon. We won't get the results of that for a few days, but a reduction in cancer cells would be very good news. The doctors think that's the case, simply because her pain has diminished so drastically.

So, yes, rough day. Two chemotherapy treatments and a lumbar puncture. After being sick in the night. So, yes, most normal people would be a bit tired, run down and maybe even grumpy. But as we already know, she's no normal person. As visitors came to see her this evening, she mused, "you know, as much as this isn't an ideal situation, it's been so nice to get so much time to visit with everybody!"

Seriously.

Mom responded very well to the systemic chemo so far. Ross and I were really worried-I've taken too many health classes in my life and am deeply afraid of chemo as a general concept. (And a friend lost her mother a couple of years ago, not to cancer, but due to treatment and that thought horrifies me.) Our oncologist told us that the side effects are mostly cumulative and won't show up for at least a few days, and probably not for a few weeks. I was also scared that Mom might have an allergic reaction to the Taxol; not only would it be horrible to go through a reaction, but that would mean that basically her only treatment option wasn't an option anymore. But she was great. She sailed through the treatment and was offered a choice of when to do the lumbar puncture-tonight or tomorrow. She chose tonight, wanting to get it done with. And she sailed through that, too. An hour after coming back to her room, she had me calling all of the burger joints within a 3 mile radius asking if they had sweet potato fries. None of them did, so she settled for onion rings, a bacon cheddar burger, french fries and root beer. Yeah, that medical marijuana is a bunch of bunk...though I will be honest and tell you that she really only ate a few bites of the burger.

Gary was sort of heart broken that we had burgers without him. Mom assured him that she'd probably be up for it again this weekend, especially if we can find a place with sweet potato fries.

We may leave the hospital tomorrow. Nothing has been officially decided, so I don't want to say anything definite, but that's what we've been told. Just in case, I'm getting to the hospital early tomorrow, so Dad can go to work early and get back early. There are zero treatments scheduled for tomorrow, not even physical therapy, because it may be her last day. We've already decided that we need to write proper thank you notes to the amazing staff, so that's the intention for tomorrow.

1.25.11

AYNSLEY:

I'm sitting at Mom's bedside, listening to Ross and Mom do qi gong. Ross is harnessing the ball of energy between his hands, focusing that energy and bringing it over Mom's head and right in front of her eyes. We are all setting our intentions for a healthy, whole body to return to her. Regaining eyesight would be a major bonus. Ross was able to focus a ton of energy-Mom was surprised by how much heat he was able to conjure between his hands and really felt his hands along her head and face.

Today was Mom's last radiation oncology treatment. I know I have written about the radiation oncology team before, but I have to reiterate: they are amazing. When I went with my parents for treatment yesterday, not one but 4 nurses and technicians hugged me warmly and welcomed me back to Seattle, saying they missed me. Today, two of the techs who weren't there yesterday were equally excited to see me; I got hugs from everyone, even the oncologist. As I said in a previous post, thank you notes are a long way off, but I couldn't arrive at today's final treatment without something, so I packed a gift bag with delicious chocolate and wrote out a thank you letter on notebook paper; I will send a proper gift this week. As soon as I presented the little gift, one of the techs gave us a card-when I opened it later, it was a beautiful hand written get well card. Yes, that's right, the radiation oncology team gave Mom a gift on her last day. I think this speaks to both parties-obviously, Mom has made quite an impression and obviously they are a very special team of healers. I feel so fortunate that we've been able to work with them.

We also said goodbye to out favorite doctor, Dr. S today. She is taking the next week off and we'll be moving facilities before she gets back. My dad was very sorry he wasn't here to say goodbye and actually Gary was, too. (Gary has already decided that in the movie version of this experience, Dr. S will be played by Laura Linney-any ideas on who will play Mom??)

The transfusion went very well and Mom was feeling better today. She had a fabulous physical therapy session and continues to walk more each day. She got a good solid nap in the morning and another one during the State of the Union. I'm spending the night tonight and am looking forward to more mother-daughter time. It's been really nice being back this trip and having my dad and Ross at work and school-I get a lot of one on one time.

On the food side of things, we had a cole slaw emergency today. Lunch was more corned beef and rye bread, but Mom wanted cole slaw with it. It is apparently very difficult to find cole slaw in Bellevue. The hospital didn't have it, so I sent out a text plea to people I thought might be coming to the hospital today. My uncle had to ask every single person who works at Whole Foods before he found some behind the pizza counter and another friend went to three stores before she was able to get it. But their hard work paid off: Mom thoroughly enjoyed the coleslaw/corned beef mix and ate a very large lunch. We also found a stash of cream soda that had been dropped off, which hit the spot perfectly! Thank you SO much to everyone who contributes to Mom eating as well as she is-it was quite astounding how many people are willing to cook, bake, stop at every grocery store, etc to help make her well. Also-D & E: the beets were amazing tonight. You are amazing. We can't thank you enough!

We started working on the Single Ladies choreography today-we'll keep you posted on how the dance progressing and if we have anything worth showing off on Sunday at the birthday party.

1.24.11

AYNSLEY:
Throughout this process, it has occurred to me that being sick involves the loss of much more than your health, vitality and strength. It also robs you of autonomy and privacy. Every second of Mom's life is monitored, every aspect of our family's relationships are on display; our world has shifted from a balance of public and private to only public. Even in the most wonderful examples of this: amazing friends cleaning our house and doing laundry once a week, scrumptious homemade meals and snacks being dropped off at the hospital room, highlight the fact that we aren't living any kind of normal life. Both of my parents have been living in the hospital for a month now. Neither one of them has had more than 5 consecutive hours of sleep in at least that long, if not longer. This is not sustainable. This worries me.

The long haul, the toll that this is taking is starting to finally show in Mom. She remains as optimistic and hopeful as ever, but she's tired. She's emotional. This morning, when it was just the two of us in the room, she finally broke down sobbing. It was actually a magic series of events: Dad had just left for work, radiation was done and we were in the middle of breakfast when the hallway got really loud. We closed the door, but could still hear the noise and so we decided to turn on some music. Mom requested a cover of Somewhere Over the Rainbow that she's really been digging, and then, mid bite of Cream of Wheat, began shaking. I immediately grabbed her hand and the sobs began. I jumped out of my shoes and got into bed with her and the two of us just snuggled in bed, listening and crying. After a few minutes, she just whispered, "We're going to get through this" and patted my hand. That's when Ross arrived. Taking one look at us, he was equal parts amused and alarmed, and came right to Mom's other side to snuggle up from the chair. Again, Mom broke down, frustrated with her blindness. "I just wish I could see you guys! And I want to be able to be here for both of your weddings!" We both just whispered "You will, you will." I don't know if we were lying or praying, but it was all we could do.

And then a nursing tech came in, reminding me yet again that nothing is private. I got out of bed, Ross finished serving the Cream of Wheat, and we went on with our day: physical therapy, occupational therapy, chemotherapy, lunch, visitors, visitors, visitors...

On the recommendation of another one of my amazing acupuncturists, I bought some reiki-infused lotions for Mom (and me!). We tried out the feet treat and a cocoa butter lotion for her dry skin and she loved them. Tomorrow we'll try a few more varieties. The first ingredient on all of the labels is "unconditional love." I'm not sure how they harness it, but what a thing to be lathered in. Healing comes in all forms and I'm not about to discount anything.

On that note, we had a visit from our hospitalist, Dr. S, this afternoon. She came in about 10 minutes after Mom had used the bathroom and she was still sitting upright on the side of the bed. Since she was up, Mom decided to do more occupational therapy on her own: using therabands, we did all of her upper body exercises. This is how Dr. S found us-Mom sitting upright on the side of her bed, doing bicep curls. Dr. S, who's a crier anyway, almost lost it right away. She just noted again how strong Mom is and how determined she is to fight. "You've already beaten the odds" she told Mom. Mom was surprised by this. "Really?" She asked Dr. S. "Oh, yeah. When I first saw you, I thought I was going to lose you that first week." Mom had no idea that that had been the case (though Dad and I definitely did-hence me demanding the oncologist tell me if she was going to suffocate). She started to cry again and just said, "I just have so much to live for." And Dr. S nodded and said that she was here anytime Mom wanted to talk about anything. It was the closest anyone has come to discussing her prognosis with her and I think it was frightening to Mom. But to me, it was exceptionally healing. The doctors don't know everything! If we had asked a month ago how long she had to live, they would have said a week. They would have been wrong, they still can be wrong, Mom can continue to beat the odds. Possible. Not probable, but possible. So I'll cling to that.

As Ross and I left the hospital tonight, Mom was in the midst of a blood transfusion. The radiation has left her red blood cell count lower that it should be (which is a completely normal side effect of radiation) and so they wanted to get her some more rbcs!
***if you are eligible to donate blood, please consider doing so***
The main side effect of the transfusion is that Mom will most likely feel more peppy. Which should be a good thing. Due to the transfusion, neither Mom nor Dad will sleep much tonight-her vitals must be checked constantly and the transfusion will take most of the night. In light of this, please consider postponing visits you were planning on making to see her tomorrow-rest will be essential and we're thinking she'll sleep a lot of the day tomorrow. If you want to come, just shoot me a text to see if she's awake 347 392 9116

Lastly, I'd like to leave you with my favorite thing that's happened so far. After another trip to the bathroom, Mom was sitting up on the side of the bed, not quite ready to lie down again. She started humming ba ba ba, ba ba ba, ba ba ba ba ba ba. I asked her shat she was singing and she sang it again, a little louder. It sounded familiar, but I couldn't quite place it. She shook her head and said maybe she made it up. But she kept singing it and dancing around (as much as you can dance sitting down). Finally, I figured it out: Single Ladies! I told her she was singing Beyonce and she got excited and said that the two of us should make up a dance to go along with that song for her birthday. "As luck would have it, there's already a dance to that song! Put your left hand in the air and flip your palm back and forth!" So both of us put up our hands, flipped them around and belted "If you liked it then you should have put a ring on it!" Maybe there will be a performance this Sunday.

1.23.11

AYNSLEY:
My new background, supporting role lasted 90 minutes. I arrived in Seattle at 11am PST and went straight to the hospital. It was a relief to see Mom and give her a hug and kiss. It was wonderful to see the rest of my family, too. I listened to what's been going on and didn't boss anyone around for a full hour, until Mom had to go to the bathroom. I couldn't help myself, I just took over. Aaaaaaaand, I'm back.

I arrived right after physical therapy, so I didn't get to watch, but I got a full report: she walked about 5 feet more than yesterday, so she's steadily improving. Even getting to the bathroom is much easier-she has significantly more leg and core strength than she did two weeks ago. Around 5pm, she did another PT session with her physical therapist friend, and was strong again. That she continues to gain strength only shows how strong her will is-her body definitely looks weaker, but she's made of steel.

Lunch was corned beef on rye with smuggled mustard (I was so worried about getting the mustard through carry-on security!) and pickles. Delicious! All of the nursing staff knew I was arriving today and they all knew I was bringing NYC food-obviously, that's been the topic of conversation for a while now. For someone always so thin and health conscious, she sure loves her corned beef. I also brought Dad some very special Monofuku Milk bar treats for him only: malted milk ball truffles. Basically, I packed a suitcase full of food and will be wearing the same clothes for the duration of my stay. Listen folks, I know what's important.

We are still unsure about Mom's next move-where she will go, when she will go, how the treatments will be handled when she gets there. I have a lot of questions and look forward to reprising my role as Aynsley the Hun tomorrow when all of the doctors are there. Not that I'm a terror (much), just that I want all of the information.

Goals for Mom include:

• increasing liquid content. She's been having some dehydration issues and has been on and off the fluid IV. If she can't keep her fluid levels (and thus her blood pressure) stable, she won't be able to leave the hospital
• continuing to eat well and a lot. She's really been intentional about this and I know it's a struggle.
• continuing with occupational therapy and physical therapy and sitting upright. She spent about an hour in the chair today, which is endurance work and very good for her.

As her birthday approaches, we need to come up with a plan for the festivities. We don't yet know where we'll be on the big day, but once we do, we'll need to start making arrangements. We also don't know how she'll be feeling; there's a chance we may start the systemic chemotherapy at the end of this week. I want all of us to get a very clear understanding of what the systemic chemo entails and how she'll feel from it. Another unknown, which, for the time being, I'm okay with.

In my two weeks in NYC, I'd been speaking with everyone over the phone and even got pictures from time to time. But still, I was so surprised to see how much weight Mom has lost and how sick she looks. She has aged so much in the last month. And when I gave her my arrival hug, she started to cry. Really briefly, but my heart just shattered. I honestly don't know how I'm ever going to be able to go home again.

1.22.11

AYNSLEY:
Honestly, not too much to report today. Mom had physical therapy this morning, and that was it for treatments. Radiation and chemo are both on weekend breaks. She started the marijuana treatments last night, and aside from being a bit, well, stoned, she's good. When I spoke with her this afternoon, she was in her usual good spirits and enjoying her visitors. Her blood pressure dropped today-it had been hovering around 150/90, which is high, but today was 100/70-not sure if the blood pressure meds kicked in a little too aggressively, if the pot treatment is causing it or what, but it's being monitored.

I arrive tomorrow late morning, Seattle time (which involves leaving early morning, NY time). The blogs for the next week or two (or whenever-I don't have a return ticket) will be coming at you live, with a lot more information than I've been giving you for the past two weeks. My personal assignment is NOT to jump back in and take over. I definitely am the bossiest of my family (Ross called me "your royal highness" for years growing up) and I'm going to need to be mindful of not jumping in and taking over every situation. It's not fair to anyone, especially with me coming and going so much. So I hope to be reporting from a more background, support role. We'll see how long that lasts.

1.21.11

AYNSLEY:
Today was another really good day! Mom ate a full serving of cream of wheat with fruit and half and half for breakfast and a good amount of beets and braised short ribs for lunch. This is hospital food, but the hospital is really great and has made a commitment to sourcing sustainable, local and/or organic foods whenever possible. I have to say, everything we get from room service is delicious. So I was very excited to hear about the short ribs-so nourishing!

This morning I had an acupuncture treatment with one of my amazing healers (I have a whole team-seriously, I am so high maintenance). We were talking about healing in general and he mused that we, especially as Westerns, do not appreciate the power of rest and nourishment. We do not hold rest anywhere near as sacred as treatment. And yet it's in the resting that we get stronger. This really resonated with me-watching Mom's progress in the last few weeks has been astounding, and I think it's due in large part to her making time for rest and nourishment. She has set her mind to eating calorie and nutrient dense food, more than her body wants, because she knows deep down it's what her body needs. She has enjoyed spending time with family and friends that has nourished her spirit and kept her laughing and enjoying her life as it is now. She has carved out time for deep naps, sleeping soundly for hours at a time and the fabulous nursing staff has respected that.

Today Mom had radiation, chemotherapy and physical therapy. She was a super star with all three-no nausea, no fatigue. She took a nap between treatments, which can't have hurt. She also had her ear checked out and the conclusion is that there's a bit of drainage from the chemo that's landing in her ear and causing irritation. Nothing that's damaging long term, just uncomfortable. Though she did say that having the scope put in her ear felt good-like an itch being scratched. So, we'll see if we can get her ears looked at at least a few times a day :-)

When I called tonight, there was a party in her room. There is practically always a party in her room. Every night I call around 7pm PST and I have a hard time getting a word in edgewise. There is always good food and laughter. People are drawn to her and she gets a lot out of her visitors. I can't wait to get back.

1.20.11

AYNSLEY:
It turns out Mom may get snookered sooner than later. But not beer, folks. Medical marijuana. Though she's trying really hard to eat (tonight I called in the middle of Ben & Jerry's Cherry Garcia time), her appetite still isn't where the doctors want it. And this morning she had a bout of nausea that prevented her from doing physical therapy. I think it's the nausea that tipped the scale in favor of the marijuana-they don't want that to get worse and she needs to be eating more than she is. Don't misunderstand-she's dramatically increased her calories this week, but it's still on the low end and she has a lot of healing to do. So...pot time!

Mom also started complaining that her ears bother her on and off. She said it's not her hearing, it feels more like an allergy. We're hoping to get an ear doctor to check this out tomorrow. And we're hoping this isn't another autoimmune response.

Mom told me that physical therapy didn't happen because she was too exhausted from a morning with no breaks-radiation, then other medical interruptions, then social interruptions, then PT. I also suggested that maybe yesterday's PT, OT and other exercise sessions could have also played a role with her fatigue. But we really don't know why today was so much harder. Ross is going to assess with her tonight and see if we need to be more proactive about scheduling social visits-these seem to be the only factor we can sort of control. Though she really does love the social visits...today another dear friend arrived from Illinois, and Mom is really excited to have her there.

Both her oncologist and the hospitalist are advocating for her to be transferred to another medical center in Seattle instead of a nursing or rehab facility. We are all hoping for this! We don't want to have to transport her for chemotherapy twice a week-sitting up is exhausting and riding in a car would be really uncomfortable. And then considering how hard it would be to get out of the car and walk back to her room after chemo...yuk, we don't want to put her through that.

Tomorrow I have the day off from work and will be combing New York City for corned beef, pickles, rye bread and bagels. Sounds like I'll need to double my initial estimate if she starts on her new treatment soon!

1.19.11

AYNSLEY:
Mom's wondering when she can have a beer. Not so much that she'll get "snookered" but a couple of sips. Though, after a moment's reflection, she figured that a few sips is all it would really take to get snookered.

She's delightful.

Today was a constant stream of visitors-one of her besties in the early morning, whom Mom begged for world news and who told her about a mother who got her 5 year old daughter's eye brows waxed and a cat who got called up for jury duty. Mom mused that she still has no idea about what's going on in the world. Then another friend, who fed her a delicious lunch while Mom sat up in the chair. Then more friends and relatives-all bearing gifts of food, massage, music and funny stories. Gary's parents sent a beautiful letter, hilarious card and sweet book and both of my parents were so touched. I just got off the phone with Mom and she was about to dig in to mushroom soup made with love from a book club buddy. She kept listing off the names of visitors-it seemed endless. But her energy was great and she had a wonderful time with them all.

Today she had radiation, physical therapy and, for the first time, occupational therapy. She really enjoyed OT-she worked with bands to help build her upper body strength. In addition to the PT and OT sessions provided through the hospital, she also did some more exercises on her own. And sat in the chair. When I was in Seattle last, a day with half as much going on would have exhausted her. She's so much stronger than she was two weeks ago. She said it's still difficult and uncomfortable to eat, but she's making such an effort and really forcing herself to do it.

Her radiation therapy will end in less than a week, and then the hospital can't keep her. So now begins the search for the next place she should be. Maybe a rehab facility or a nursing home-we're very hopeful that we can find a suitable place that's close to home. We aren't sure what the next treatment steps are after radiation, either; I'm assuming she'll continue the chemo that she's already doing and the oncologist has mentioned other treatments, too. In any case, she will most likely be celebrating her birthday in a new place. I really wish she could just go home, at least for the weekend, but the house isn't able to accommodate-there are stairs everywhere and no shower or bath on the main level. And no one there to help us with medication, physical and occupational therapy, meal prep, safety-proofing the house while she can't see, etc. Again, we're just confronted with a new version of normal life. It will take time, but we will figure everything out.

I feel so fortunate that we have friends and family who have all jumped to help without any hesitation; the amount of love that has enveloped all of us is overwhelming. My email inbox humbles me every day. Each morning I wake up to another stranger writing to tell me a beautiful story about how my mom touched their life, how they are sending strong healing energy to our entire family. Each day I get an email from a long lost classmate or a facebook message from member at the Y who takes my class and is sending healing energy to me. This experience has so dramatically changed my entire family. It has brought out the best version of each of us. Rather, I should say, Mom brings out the best version of ourselves. We can't show up for her in any other way.

1.18.11

ANAL AYNSLEY:

So, before I get into today, just a couple quick notes I want to share with everyone:

1) Mom's name is FLYNNE. I know she can't see when it's misspelled, but it drives me batty

2) PLEASE make sure that if you visit the hospital, you wash your hands frequently. Hospitals have crazy weird germs in them and Mom's immune system isn't the strongest in the world. Please either use the hand sanitizer that is everywhere in the hospital or wash your hands in the sink when visiting. This is for your protection, too!

Okay, now on to today. Mom continues to amaze us all. Despite the lack of sleep last night, Mom spent today strong. Her limbs have lost considerable strength since being admitted to the hospital; when I was there, she couldn't bring her knees up towards her chest to get out of bed. Sometimes she could use her arm strength to help her knees up, but if she wanted to get them all the way up, she needed help. Today, she was bringing her knees to her chest using only her leg and core muscles. And she was doing reps of this. As in, up and down and up again. And this wasn't even her physical therapy session. This was after her physical therapy session, where she walked out of her room, down the hall farther than she's gone before, and back.

I have a confession to make. I used to think that every good day or every good sign was the eye of the storm. I thought that it was the result of her picking something to succeed in, focusing all her energy into having that one victory and then she'd have nothing left. When I was in the hospital for those first two weeks, I watched her deteriorate quickly. I watched her lose her sight in three days, watched her lose her balance and lower body strength. I listened to her voice slow and change pitch, I watched her head get shaved and her hair fall out. I watched as she struggled to swallow, then cornered the oncologist in the hallway and demanded to know if she was going to asphyxiate. I watched her take one step forward and two steps back and I clung to my theory of her going out in a ball of fire and energy, having one shining day of strength before going downhill fast. I was terrified to celebrate the good days or the strong moments because I thought they meant something bad just around the bend. I was wrong. And I'm finally comfortable now to admit it. I am not afraid that a day like today, stronger than she's been since the diagnosis, more self-sufficient than ever, means tomorrow will be terrible. Okay, I'm a little afraid, but I'm not carrying my phone with me into the bathroom anymore. My heart doesn't sink every time I get a text message or an email.

She continues to eat well, to maintain her sense of humor. Friends and family have been showering her with delicious meals, poetry and laughter, hats and scarves, and paper cranes. Dad went back to work today for a few hours, so she spent some nice time with girlfriends and really enjoyed herself. Ross continues to search for ways to study at the hospital. We've created a new version of normal life that everyone in her life was so graciously accommodated. Dad keeps saying how impressed he is with how many people constantly show up for her (and for him). I keep telling him: you reap what you sow.

1.17.11

ROSS:
Uncle David bought my mom a boom box for the room so that she can listen to CDs, MP3s, and the radio. Mom expressed interest in listening to the radio quietly in the mornings when she wakes up before my dad. That way she can listen while he sleeps in. So last night, before I left, I put the boom box next to her bed and taught her how to feel for the "on" switch so she can turn it on when she wakes up. Well, dad was not happy with me last night. Turns out, my mom has no concept of what time it is when she wakes up, and has no real way of figuring it out. So, she turned on the radio for her morning listen at 1:15 am. It also wasn't as quiet as my dad would have liked it, in fact, I don't think it was quiet at all. He woke up and walked over to my mom's bed, "What are you doing?" he asked. "Oh, I'm just listening to the radio.." she replied casually. "I know, but it's 1 in the morning." At 3:30am, her IV ran out and started beeping loudly. My dad turned it off, but 5 minutes later is starting going off again. Dad had to run down the hall looking for a nurse to turn the machine off. 90 minutes later, nurses came into the room to check mom's vitals and then two hours later, a dear friend showed up with a latte for dad. Needless to say, they did not get much sleep last night. My dad was not happy with me teaching her how to turn on her radio. He also wasn't happy with his brother for buying it for her. But he said, "I guess now we're even for when I bought his son a miniatured drum set when he was 4..."

Other than not too much sleep, mom had a good day today. She ate salad for the first time since she got to the hospital. Spinach and goat cheese, mmmm. Mom had radiation today which went well, she says. It zonked her out during the afternoon, but she still got to take visitors, and it doesn't seem to be upsetting her stomach or swallowing. For physical therapy, with a walker, mom walked out of her room and over half way down the hospital hallway. I was not at the hospital for that, but when I got there, a nurse came up to me and said, "it's so good to see your mom out and walking!

Sorry this is not a very long update, but I have a lot of studying I need to get to. Mom is still eating well, pushing herself physically and having better luck taking all of her pills (the worst part of the day). Another good day at the hospital! Thank you for all your comments!

1.16.11

AYNSLEY:
So, first let me start off with the sad news of the day: The Seahawks. Though we are all disappointed to see them bumped out of the play-offs, they fought a good fight and made it farther than, quite honestly, they should have. And in related news, Gary and I are very excited that the Jets caused another upset and get to stay and play another week. Though I haven't explicitly said so in the blog, I am keeping tabs on all of the gifts we have received since Mom's diagnosis. Not the physical gifts (though thank you so much for all of those, too-amazing!) but the little miraculous moments that have been popping up continually. And football has been one of them. I never cared about football in any way shape or form until I started dating Gary, but he's such a patient teacher and makes watching the games so fun that now I actually enjoy it. And then-gift!-I get to talk to my dad about it. Silly, I know, but special to me.

So on to the good news! Weekends are so great. No radiation, not chemotherapy, lots of visitors, homemade food, physical therapy that Mom's not too exhausted to push herself in...all wonderful gifts. Today Mom had her first qigong lesson, which she said was great. Very interesting, not difficult and, she thinks, very good for her. She received a CD (thanks J!!) so she can do some of the work, but also just listen passively. Ross also mentioned that we all can do some qigong for her by helping to visualize her whole, healthy and strong. For those of you who haven't seen her in the hospital, all that requires is conjuring the last image of her you have. For those of you who have been visiting, please think of your favorite memories of her; I guarantee, it will be of a time when she was whole, healthy and strong.

Mom ate well today-her stomach has been feeling better so it's not so uncomfortable. She didn't eat as much as yesterday, but still good amounts. She has really set her mind to nourishing herself. She had a great PT session today and walked a LOT-out of the room and into the hall, which is the longest walk yet. And when Ross arrived at the hospital this morning, she was sitting up in the chair. She's been taking good strong naps, too; she has a great balance of hard work and relaxation/recovery. I know some people have been disappointed not to be able to see her if they come to the hospital during a nap, but the rest is essential to her treatment and we tell her everyone who stopped by when she wakes up.

It continues to be difficult for me to be away. I feel like I constantly have to justify why I'm in NY (not to her, but to me!) so I told her about how I was working tomorrow on MLK Jr day and what else I've been up to in NYC. Gary and I picked out our ketubah (marriage contract) last night and started our preliminary pre-marital counseling earlier this week. She's super excited about both things, saying that the ketubah sounds beautiful (it is!) and that she can't wait to hear all the questions we got asked-she loves teasing us. I'll be back in Seattle in a week, and Gary a few days after that. So until we can give her physical hugs, we'll work on our long-distance visualizations of everyone in our family being whole, healthy and strong.

1.15.11

ROSS:

Some days just start off well and continue to stay positive. Today was one of those days. Let's start by talking about food. Mom's appetite was the best I've seen it in a long time. She ate complete servings for all of her meals, with small snacks in between! It started off with a full serving of cream of wheat with a pack of high calorie baby food mixed in. For lunch, a dear friend brought mom a freshly baked blueberry bagel. This is what she normally eats after yoga class on saturdays. "I live for this meal after yoga," she said, while completing the entire half bagel (with probably 2 servings of cream cheese). Lunch was followed up with a couple bites of milkshake brought by another couple of dear friends. Before mom's afternoon mega nap, she ate some fruit salad. After an eventful morning (which I will get to later), she napped for 4 solid hours, before she woke up just in time for dinner. I gave her a couple bites of salmon I ordered off the hospital menu, which she loved and will hopefully order more regularly. The main course was homemade butternut squash soup. She ate all but two bites. "MMmmm" she said, "I can taste so many other flavors in here." For desert she ate a few bites of homemade chocolate chip banana bread! What a yummy day.

As I said, we had a beautiful eventful morning. When I arrived at around 11:30, she was just completing physical therapy. She was sitting upright and performing leg exercises. We had quite a few visitors this morning and mom was awake and energetic enough to handle everyone! She received a beautiful gift from two dear family friends who compiled a string of loving messages. Mom was deeply touched by the gesture and the messages, she began to cry. There are some things you don't need to see to know they are beautiful. We described the gift's appearance to her and we brought it to her fingertips where she could touch it, "Wow, it's so beautiful!" She said.

(from left to right: Brianna, Lorren, Claudia)

Days like today are gifts, I love every minute of them. They remind me of the strength of renewal, determination, and appreciation for life. Mom was strong with all of these today. I want to remind all of you that we read mom your blog comments everyday, and she is never too tired to hear them. They are an enormous part of her strength. Thank you, all of you.

1.14.11

AYNSLEY:
I found out that Mom was diagnosed with breast cancer at 6pm on the day before the winter solstice. Though I tried not to drive myself crazy, I spent the shortest day of the year googling breast cancer and was relieved to find that 90% of people diagnosed with breast cancer are alive 5 years after their initial diagnosis. The day after the solstice, we found out how bad her cancer was. How fast the tumors had invaded her lymphatic system, how far they had spread, how much damage they caused. The entire northern hemisphere was feeling the feeling the limits of daylight and for my family, it was truly the darkest day of the year. I ran as fast as I could to Seattle (which, on December 23rd, is not that fast).

The days are noticeably longer now. Leaving work tonight, I saw the remnants of the sunset, whereas last week it was dark. We are closer to spring, to renewal, to light. To mom's birthday and to Imbolc, which are almost the same day, the halfway point between winter solstice and the first day of spring. Forgive the hippie digression; I've been thinking about this a lot lately, and it makes perfect sense to me. Imbolc is the first of February, when it is usually bitterly cold, when I am going stir crazy in the rain in Seattle or the snow in NY. It is also the time of year that the first crocuses break out from the frozen ground. Those first sprouts look so fragile, but they are mighty. They are determined to fight the freeze, to grow up towards the light. This is my mom. She's an Imbolc baby: born January 30th, beautiful and delicate looking, but fiercely fighting for her patch of sunlight. I never knew the extent of her power until now, but she's as determined as the first flowers of February to live and thrive.

Today was another perfect example of her iron will. She is so determined not to have a feeding tube that she ATE. She complained of painful indigestion, but still she ate almost an entire grilled cheese sandwich, some katie shake, the strudel drink she likes and more delectable food from the same marvelous cook who brought the chicken and potatoes she loved a couple of days ago. Another dear friend is working on solutions to the stomach upset so hopefully she'll be able to eat that much (or more!) without the discomfort. She also had a shower today-an occupational therapist helped her, but did not do as good of a job as me (my assessment, not Mom's). She said it felt great to get clean, but that there weren't enough warm blankets and the water wasn't warm enough. Clearly, the OT didn't need to have 27 towels; she wasn't planning to flood the bathroom like I do. She probably also didn't get in with Mom, which is the best way to soak through your clothes, but also to tell if the water temperature is okay. Hopefully Mom can hold off for a week until I get there to do the next one. My showers may be way messier, but I love them.

Radiation required more mapping today, so it was longer and uncomfortable. But she has a break for the weekend-the only procedure she has scheduled for Saturday and Sunday is physical therapy, which is so so good for her. She says it's really hard, but she always seems stronger, more alert and hungrier after PT, so I'm really glad it's back on the daily schedule.

We're all hoping for an easy weekend, that she gets some much needed rest and can eat more comfortably. She still has an uphill battle before breaking through the frozen ground.

1.13.11

AYNSLEY:
Honestly, today I was out of the loop. I didn't have a chance to speak with Mom until tonight at 11pm (EST), but she sounded great then. Ross and Claudia were in the middle of "spa treatment" as she called it: hand and foot massages. I'm not sure if I mentioned this before, but Mom particularly likes the massages that Ross and Claudia give. At one point when I was there, she requested a foot rub and I started to pull off a sock. "No, thanks, honey-can you please send Ross and Claudia in? They were doing such a good job earlier." So it's very lucky that I live in NY and they live in Seattle and not the other way around.

Radiation was moved to later in the afternoon because one of the machines was out of order. So Mom had physical therapy at 11:30am, (and that's now on the schedule for 11:30 every day) and then chemo right afterwards. She called it her shot in the head when I spoke with her. Today the chemo headache wasn't as severe as it's been in the past, which was great. I volunteered Ross and Claud for a head massage when they were done with the hands but Mom said she didn't need it.

Despite making an effort to eat more yesterday, it continues to be a struggle to get enough calories in. She enjoyed last night's dinner so much that she ate leftovers for lunch, which was great. And Dad is planning to surprise her tonight when he comes back from showering at home with her favorite favorite snack: stove popped popcorn. Of course, popcorn isn't super calorie dense, but I think it will peak her appetite and maybe prove a gateway food for other options tonight. I also got her to start making a list of things she wants from NY when I come back next week. So far:

• corned beef and rye bread ("of course")
• pickles (oh, how my plane mates will love me!)
• bagels (though this may have been a Ross request...),
• black and white cookies (which I like to give Gary credit for introducing her to-for those of you who don't know these NYC cookies-they're basically cake and amazing! And Gary's favorite)
• a pretty head scarf. She said her hair would pretty much be gone when I come back (though I think it's gone now) and I told her I'd look for something in reds and golds-everything she has now is blues, greens and purples, which are definitely her favorite colors, but she's going to need many options

She continues to sound like herself and is really fun to talk to. I'm hoping to head back out the 22nd or 23rd; I have a ticket for the 27th, but my work is being SO AMAZING for me and I'm having a hard time being in NY, so I think I'll just go sooner. Plus another dear friend of hers will be coming for a long weekend visit next weekend and I want to see her, too. Though it's really important for me to come home, recharge, work, see my friends, work out and get acupuncture, I don't want to miss any more moments with my mom than I absolutely have to.

Paper Cranes

We've gotten some comments asking if it's okay to participate in the paper cranes even if you're not in the waiting room. Absolutely! You can mail them to our house or to the hospital-email me if you need one of those addresses: aynsleykirshenbaum@gmail.com

Also, I think it would be really nice if you signed your name on your crane(s)-once we amass the crane army, it will be a wonderful keepsake to see all the loving hands that helped create them.

1.12.11

AYNSLEY:
Morphine lollipops. When I said these words to Gary, he just gaped at me. Morphine lollipops! Truly, modern medicine is amazing.

We discovered the drugged desserts when Mom got a back spasm on her way down to radiation. I'm not sure what caused the spasm, but the morning was basically a total loss. Yesterday our fabulous nurse T pulled Ross aside and told him Mom wasn't eating or drinking enough and if she didn't start, they'd have to put her on a feeding tube. Ross promptly told Mom, who of course has no intention of being put on tubes of any kind and set her intention of the next few days to eat. This morning they ordered a great breakfast, but it took so long to be delivered that they only had 10 minutes to eat before needing to go downstairs to radiation. So there was a bit of breakfast stress before rushing out the door...maybe that contributed? In any case, she arrived at radiation not having eaten what we consider enough and in pain. And then the miraculous suckers were produced. The plus sides of medicated candy are surely numerous-I'm confident that blog readers can come up with several of their own-but the down side is that it really knocked Mom out. She was really tired/out of it for much of the day. But still damn determined to eat. As soon as she got back to her room, she ate some more breakfast (scrambled eggs, french toast, bagel and lox) and then zonked out.

She also had a visit from the physical therapist today, but was pretty tired still from the pain killers (and also cancer! When I mentioned to Gary yesterday that I was worried about her being so exhausted, her very gently reminded me that she is very, very sick. It's not that I forget that, but I do sometimes forget what a toll it's taking). So instead of walking, they did bed exercises. We're still trying to get the PT on a more regular schedule; it seems to be hit and miss but she progresses quickly when she has it daily.

Ross and Dad had a slumber party last night that sounded great. Mom is so cute-since she can't see, she has no idea what time it is. Her days are divided by treatment and procedure, not time. So at 3:45am, she woke up to use the bathroom, then started chatting with Ross about breakfast plans. Speaking from experience, I can assure you that the late night/early morning chats are the best-she's super awake and alert and no one else is there to interrupt. Magic, basically. I'm sure Ross will treasure the talks they have during these overnight stays like I treasure mine.

Mom has been a bit dehydrated, so she's now back on the fluid IV. Her stomach has also been upset. The dehydration is most likely a result of not drinking enough. The indigestion could be from any number of medications she's on, the radiation, the fact that up until today, she hasn't really been eating the past few days.

Today my dad also had some frustrations with the doctors. We had a stand-in hospitalist (no peace sign belt buckle, that dude comes back tomorrow) who did not start out the conversation well when she said "Wow, looks like she's been blind for two days. That's too bad!" Apparently it went downhill from there, and we're actually looking forward to Phish-man tomorrow. Though I reminded my dad that he absolutely can request a different doctor at any time. And as frustrating as it is for me not to be there, in this case it was probably a good thing. The f word would have made several appearances in the first sentence out of my mouth, which overall wouldn't have been good for anyone.

By the evening, Mom had perked up a bit. Friends brought by an amazing dinner that she raved about: spiced chicken with eggplant and peppers and roasted potatoes. She ate almost half a chicken breast, plus lots of potatoes. And then some cookie dipped in chocolate! And then a few bites of the katie shake that she likes! All with an unhappy tummy. So now I'm going to digress (again!) into singing the praises of my mother. Clearly, she's not eating for a variety of reasons. Because she's not hungry. Because she's uncomfortable and food is the last thing that sounds appealing. Because her stomach hurts! Because it seems like there's no time, with the constant stream of doctors, nurses, technicians, tests, visitors, my phone calls etc. And yet. Ross told her last night that in order to get well, in order to maintain more autonomy, in order to prevent another medical intervention, she has to go against the messages her body is giving her. She has to literally put mind over matter, overrule the physical signals and eat. And so she did. Simple as that. Heroic as that.

How to fold a paper crane

http://www.pacificfriend.ca/html/how_to_fold_a_paper_crane.html

1.11.11

ROSS:

I want to start off by thanking my mom's wonderful book club for holding their meeting in mom's room last night. She had a great time. There is a new project we will be starting soon in the waiting room that will be headed up by mom's friend Zelda. We will be folding 1000 origami cranes! According to wikipedia, "An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury." More to come on this...

Today we were given some news that is very hard to swallow. The neurologist seems to believe mom is facing an autoimmune attack. Basically, the immune system fights off cancer cells in the body, however, the cancer cells can look similar to the healthy cells of the nervous system. When this occurs, the immune system can start attacking the nervous system. He is attributing this to her loss of vision, acute numbness near her feet and ankles, and poor reflexes. In short, he is not expecting her vision to return. He said there is very little that can be done to treat this. One possibility he mentioned is an IVIG, which stands for intravenous immunoglobulins. He said this is effective in roughly 10% of people given this treatment, and not only that, it can cause kidney failure, heart attack, and other horrific conditions. Doctors are also unsure about how it even works on the people it does help. So, we're going to go ahead and pass on that...

As you can imagine, this was a very difficult conversation to have with this doctor, and it definitely took a toll on all of us. When the doctor left, I asked my mom what she thought, "well," she said somberly, "this puts a crinkle on things."

It is important to understand that, as of now, it is only speculation that this autoimmune attack is actually taking place. Both Aynsley and I are not convinced her vision is lost for good. We're by no means doctors, but still, we have heard multiple stories of friends who were told by doctors they would never see again, and I'll have you know, they're sight came back. What I told my mom is that everything we're hoping for is against the odds, but that doesn't mean our hopes are not possible. We have many things going for us that western medicine, and even science for that matter, cannot account for. We have so much love and so much support, and these things matter; they make a huge difference. For now though, mom is disheartened. This news was a major blow to her.

When I talked to Aynsley on the phone today she made a very good point, that it is okay for mom to get upset, she has every right to be discouraged. If it were me, I would have felt these emotions a long time ago. Feeling down or upset will be a good release for her, and soon, she will be able to return to focussing on healing. And heal she will. Our hope is every cell.

In some brighter news, I am sleeping at the hospital tonight. Just me, my dad, my mom and her commode... who could ask for a better slumber party?

1.10.11

AYNSLEY:
Mom rode down to radiation today in a wheelchair. Every other day that's she's had radiation, she's ridden in a stretcher. Sitting up requires a lot more strength, endurance and energy. And today, she was fine to do it. We don't yet have any medical confirmation about tumors shrinking, but our own anecdotal evidence (less pain, more strength, less slurred speech, more alertness, etc) seems to indicate that she's responding to treatment. Maybe we're seeing what we want to see. But I do believe in the healing power of prayer, positive thoughts, laughter, hugs, massage (I told you I was a hippie) and more importantly, Mom does too. Healing takes many paths, but believing that it is possible seems to be an important next step.

That being said, we're trying to keep everything as positive as possible. While I am definitely open to hearing everyone's stories about their own cancer or other battles, please keep the tragic ones out of Mom's ears for now. If you need to share some amazing magic treatment from Thailand that saved your boss's niece's neighbor, tell me all about it in an email-please don't suggest to my mother that she should be in Bangkok instead of where she is, getting phenomenal care from world class oncologists (Seattle Cancer Care Alliance is extremely reputable! Google them!) and quite possibly the most heroic nursing staff in the country. Every procedure, every treatment, every medication that Mom takes has been carefully considered and approved by her and her family. We all desperately need her to be with us for the next three decades and we have no intention of compromising that possibility. Please know that every decision is a reflection of the decisions she's making (she's 100% in charge of her treatment) and love is our only motivation.

Yesterday I reported that both my parents enjoyed a glorious 9.5 hours of uninterrupted sleep. This morning, the amazing nurse G was talking with my dad and thanked him for all his help the night before. "Huh?" "You know, thanks for being up between 3 and 4am, helping her with the bathroom and ice and everything." "What?? I gotta tell you, G, I don't have any recollection of that." And that, my friends, is how you get rest in the hospital. Forget that you were awake at all. It's truly sleeping like a baby :-)

Tomorrow she has an MRI scheduled to see if the doctors can see what exactly is interfering with her vision. The hope is that if we can identify where the problem is, we can treat it and get her vision back. Apparently the doctors are also all in favor of a clean-shaven Ross.

here's the beard that will disappear

1.9.11

AYNSLEY:
For the first time in over three weeks, my mom sounded like herself. He voice, her speech tempo, her sayings-everything was 100% normal. I think the radiation is working. Her pain is far less, so she's on less painkillers that slow and slur her speech. Also, maybe the tumors around her brain are shrinking, so there's less interruptions in those areas. She also had a great night's sleep; Dad reported 9.5 hours last night for both of them (!!!) The portacath is also wonderful. I admit, I was skeptical when they put it in, thinking we're not beginning systemic chemotherapy for at least three more weeks, but she's loving being "so high tech." All the blood draws happen through it and she's been able to swap oral steroids for intravenous ones. Since swallowing pills is the only procedure she ever makes a fuss about, this is wonderful.

All that being said, it's impossibly difficult being away. Today was my first day back in NY that I didn't work. I had some housework to do (amazingly, it didn't occur to Gary to sweep the floor in the week that he was home and I was in Seattle...though in fairness, he did a fantastic job cleaning the bathroom), errands to run, and a lot of sleep to catch up on; but by mid-afternoon, I was pretty upset that I wasn't at the hospital. Ross, Claudia, Dad and all the other friends and family are doing an amazing job and Mom is so wonderfully cared for. It's just hard being away.

The wi-fi in the hospital room is not working, so unfortunately you have to rely on my second hand reports instead of Ross's first hand musings. Hopefully that will be fixed tomorrow.

In the meantime, I'd like for you all to understand the magnitude of Ross shaving his beard when Mom gets her vision back. I suggested that he post a picture of himself on the blog so you all could see the magnificence of his beard. Gary said we could post a photo of ZZ Top and call it a day. Check out the New Year's Eve photo in the post from 1.31.10.

Move me to tears

ROSS:
Last night was a beautiful night. Rabbi Kinberg hosted a small shabbat service in mom's room, where we were joined by a small group of friends and family. Mom had on her colorful flower hat, and blue scarf. I found so much joy in hearing her singing along with the prayers, and even singing some harmonies. She was enjoying herself thoroughly. Towards the end of the service, Rabbi Kinberg led us in the Mi sheberakh, a prayer for healing:

May the source of strength who blessed the ones before us, help us find the courage to make our lives a blessing.

It was here when my mom began to cry:
Bless those in need of healing with the renewal of body, the renewal of spirit

Unlike Aynsley, I had not seen my mom cry once since before the diagnosis. I knew though, in that room, surrounded by loved ones, she was not sad. She could feel our love, our hope, our presence, our prayers, and it moved her to tears. She has been moved by every small act of kindness, from people she sees everyday, to people she has not heard from in decades. And everything seemed to add up to an overwhelming appreciation for her life that was too big to contain. And so she wept.

She asked me earlier to play guitar during the service, and after the Mi sheberakh, I took out my guitar and began to play. As soon as I started, I felt her hand press against my back, and once again, she began to cry. This time it was louder and heavier. It was uncontainable, like a river jumping its banks, free to create a new channel for itself. When I finished playing she was still crying. "I am just so grateful for everyone" she said.

Last night was the first time I truly realized the strength my mom has to carve out a new direction for her life. Every good deed and thought you have sent our way is a drop of water, and my mom is a mighty river that is untameable, unmeasurable and growing larger still.

This morning my mom had a cat scan to see where else cancer might be in her body. This test was to see if cancer has spread to her lungs and liver. Speaking for myself, I have been dreading these results for weeks. But I am happy to report that there is no cancer in Flynne Kirshenbaum's lungs and liver. This is the best news we have received! Now, we can focus clearly on mom's number one, main goal: getting her eyesight back. She has said she plans on doing this in the next couple of days. As soon as she does, I am shaving off my beard.

thank you everyone.

1.7.11

AYNSLEY:

The PET scan has been postponed until tomorrow. I'm not sure why, though even without that procedure, Mom had radiation, chemotherapy, an echo cardiogram, surgery to implant the portacath and a brain scan. We don't have any of the results yet, though the whispers are that the echo at least was fine. Due to having the portacath inserted, Mom couldn't eat during the day-the surgery was later this afternoon, so she went all day with no food. Though it sounds like she more than made up for it; when I spoke with her this evening, all she was talking about was the amazing food she'd been eating. Soup, muffins, salmon, cookies and above all, some strudel drink (huh? no idea) she was totally crushing on. She was a little stoned from the anesthesia and just so cute.

Between raving about different succulents, she kept telling me what an amazing experience all of this has been. That's a direct quote: "It's been an amazing experience." Who says that? Who in their right mind, after enduring two surgeries in two weeks, the complete loss of independence, loss of vision, baldness, daily uncomfortable radiation, tummy unrest...who says it's been amazing? Of course she's not saying that cancer has been great, but she wholeheartedly sees beyond the physical discomfort and is mesmerized by all of the people who have flooded out of the woodwork to hold her up. The only times I have seen her cry were 1) when she was presented with the healing quilt and 2) when I said goodbye. And it wasn't really crying, it was just a few tears from being so overwhelmed with love that they couldn't be contained.

A dear friend wrote her a letter today, expressing the awe he felt when thinking about her. I agreed and wrote back: "I have been so in awe of her-of her fierceness, of her willingness to allow what is, what life has become; and let go of what she can't hold. I am in awe of her hope. I don't have it. I would have mourned everything she's lost by now and she authentically is embracing what she has left." It's such a beautiful way to view life. It's such a gift to know and love someone who feels that way. Every bad diagnosis I've gotten in my life (and there have been 3 and they don't come anywhere close to this) has led me to tears. I came out of the sorrow to rise up with fists, but I go to that place of pity. When I first heard her diagnosis, I was so angry that it was her instead of me-I'm the fighter, the one with high pain tolerance. I'm the one who toughs everything out. I was worried that she wouldn't fight. I had no idea. She fights so gracefully that you don't even realize it's fighting. She is so focused on all of the positive things this has brought that the negatives fall by the wayside.

When I teach yoga, I ask the class to set an intention for their practice; it can be physical, emotional, personal or community oriented. Sometimes I'll set the intention for them. Yesterday we (I) decided to bring yoga to the radiation oncology department and set an intention for both Mom and the technicians: to bring back her eyesight. I explained to them that I was a little bit hippie and that sometimes we do this and they were all totally on board. And Mom was, too. Since then, she keeps talking about setting intentions and how she continues to do so. It makes the treatments more bearable. It helps her focus on something she really wants, on a goal to achieve, on a positive note. "Amazing experience." Indeed.

Blog Comments

AYNSLEY:
Hooray for you smart people-I didn't have the correct comment setting enabled for the blog. You all should be able to post comments directly to the blog now.

But emails are still great, too.

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.