2.28.11

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

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

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

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

2.27.11

AYNSLEY:

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

Life changes fast.

Life changes in the instant.

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

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

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

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

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

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

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

2.26.11

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

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

2.25.11

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

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

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

2.24.11

AYNSLEY:
More of the same. Mom continues to sound great on the phone. We speak about twice a day to catch up on both of our daily events (walking, pill taking, visitors vs work, acupuncture and training). Often I catch her in the midst of a snack or a meal; she's having a much easier time eating the last few days and seems to have a bigger appetite. Other times I catch her during pill time, which is always arduous, but she plows through. I don't have a real sense of how she's doing, it's impossible to know being far away. I plan to give you all a much more in-depth look on Sunday after spending the day there. In the meantime, just know that she's continuing to gain physical strength, today walking 20% more than yesterday, and her emotional strength is as ferocious as ever and shows no sign of diminishing.

2.23.11

AYNSLEY:
I find myself counting days a lot. Four days until I go home. Thirty one days until I get married. This is a completely self indulgent practice and one that is not healthy for me. For two months now, people have been taking me aside, in person and in email, and giving me encouragement and permission to take care of myself, take time for myself and do things I want to do. Not that I needed any encouragement for this-as soon as my dad called me in tears, "should" flew out the window and I've been doing whatever I want to do, whenever I want to. Which means waking up at 6am every day to work out, then taking another workout break in the middle of the day. It means eating chocolate with breakfast, lunch and dinner and every snack. It means working six days a week, minimum, and refusing to even pretend that I'm going to do my own laundry. It's constantly living in the future, losing the struggle to stay present, and counting days until. If I don't nip this in the bud...okay, too late for that...if I don't cut off the vines of this growth, I'm going to completely miss out on my life. People have been treating me as if I'm excited for the wedding and I can't even fathom for a minute why I would be. Gary finally staged an intervention last night and insisted I figure out how to enjoy it, or he was going to get on the phone with the amazing Seattle support crew and ask them to take care of everything.

So, today. Today is a day that was lived, both by me and my mom. I woke up early to run 5 miles while Mom worked hard to sleep in. She did sleep well last night, and then exercised hard today: she went walking down and back a very long hallway-her farthest walk yet. She made an effort to eat a lot today, even asking Ross to bring her savory snacks from the Taco Truck to add fiber and calories to her dinner. I did my regular dance between "I should really try to lose a few pounds before the wedding" and "Mmmm, chocolate" and, of course, ended up as I always do: eating tons of veggies and lean protein and an entire bar of 85% chocolate. Mom's been successfully fighting her infections-her white blood cell counts are back up closer to where they should be and she's feeling well. We're guessing she'll start chemo again the week after next, so maybe the week of March 6th. I don't know when we'll know the date for sure, but now that we know she's responding so well to it, I think it's a little easier to take. The nausea, fatigue and weakness seem less scary and more worth it. Mom's attitude has shifted since the CT scan results. And she had a positive attitude to begin with! But now there's really attainable progress to be made, and she's set her mind to attaining it. And really, attitude is everything.

2.22.11

AYNSLEY:
Another magical date-look at the numerical symmetry! And Mom had a good day. When I asked her how she was feeling, she said she was feeling good. I haven't heard her say she felt good since the middle of December. I know the break in chemo isn't great as far as the Cancer Fight Plan, but it's so great for her to get a reprieve. She has her appetite back, her stomach isn't upset, she can swallow...all such good things. Today she had her first physical therapy session in almost a week and though she thought her legs were a little weaker, her core strength was as good as ever.

Everything about the past week really highlights how much the Cancer Fight Plan is an art, not a science. Each person responds differently and Mom's course of treatment from the get-go was very aggressive (the appropriate response, since the cancer is very aggressive). But since her three systemic treatments, she's seeing the cancer move in the right direction. Maybe a couple of weeks off from chemo will give her an opportunity to make significant strength gains and resume the fight from a more stable and healthy place. I hope so. Only five more days until I get to go home

2.21.11

AYNSLEY:

Mom is back at the Kline! Infections are under control and she's happy to be out of the hospital. Dad is going back to work tomorrow and I'm hopeful that both my parents get a good night's sleep tonight.

There is something in me that's a little frightened when she's away from the hospital. It's so weird, as I'm generally someone who fears hospitals and avoids western medicine if at all possible. Common logic would assume that I'd prefer to have Mom at home with an acupuncturist and herbalist on call. And while that sounds lovely, the truth is that I'm terrified of her health stability and take comfort, though cynical comfort, in the hospital.

But she's out of the hospital, which is a good thing; all of the doctors agree that she doesn't need to be there. I know that she'll likely get more rest and better recuperative care at KGH. So I'll wrap my head around my faulty logic of trusting the doctors when she's at the hospital but being skeptical when they say she's good to leave and embrace this week as the respite it is: no chemo and the knowledge that the tumors are smaller than they were two months ago.

2.20.11

AYNSLEY:

The good news is that the yeast that's growing isn't some mutant resistant strain and should be easily treated. The bad news is that it's there at all, and that it accompanies the other infection. But the doctors are working on treating everything and are optimistic that Mom will respond well to the treatment.

Last night was a sleepless night for both of my parents. Mom was exceedingly uncomfortable, so they were both up all night, trying various remedies to get more comfortable. By 7pm today (PST) Mom was feeling much better. She had an appetite and a little bit of energy for visitors. They are still planning to go back to KGH tomorrow, though what time isn't clear. Dad continues to eat well at Overlake.

The visitor energy is a double edged sword. While Mom is always happy to see visitors and she perks up and feels well when they're here, once people leave, it becomes very clear that entertaining guests takes a lot out of her. One of the problems is that Mom doesn't have a mean bone in her body (it's unclear how I got so many mean bones) and she has a very hard time turning people away or asking for breaks when she needs them. Under normal circumstances, this is what it is. Mom recuperates during the week day from having the steady stream of visitors on the weekends and evenings. She basically sleeps when she's not eating or getting physical therapy or occupational therapy.

The problem is that now we have the wedding to deal with. Right now, it's still manageable-wedding planning takes place in small groups of very close friends and family who are aware of Mom's limits even when she's not showing her fatigue. My concern is that when the day gets closer, she's going to want to put more energy into it. That she's going to take what force her body needs to fight the cancer and infections and grow stronger, and waste it on frivolous nonsense. My other huge concern is that the wedding guests are going to want to spend time with her. Of course they are-90% of the people who are attending are coming to this wedding because they feel it's the right thing to do for Mom. Which is so well intentioned. It's so hard to criticize things that are done in the name of love (but here I go). Mom will not be able to enjoy the wedding if she's been entertaining guests that day, or the day before. It's going to be impossible for me, but even I can't spend that much of the day with her-I'll be taking pictures with Gary and probably doing something ridiculous to my hair. I'm hoping that we can spend some quality time together, just the two of us, in the morning, then let her rest and sleep so she can sit upright for the hour and a half the wedding and reception will be. Sitting up is exhausting. I just want to make sure people understand that they will not be spending quality time with Mom at the wedding or during the wedding weekend. The whole point of getting married at KGH is so she can be present and enjoy it-that means not being swarmed by well wishers and definitely not being exposed to a plethora of germs. More than two people at a time is disorienting, especially in a noisy room. Her birthday party was a perfect example of how things should go: everyone got about 5 minutes of one on one time, which she enjoyed and it allowed them to show her a little personalized love.

2.19.11

AYNSLEY:
Mom's still at Overlake and will likely be there until Monday at least. In addition to the bacterial infection, she's also got yeast growing. None of the nurses are sure if it's okay for her to have probiotics, which I stocked up on before I left the last time and are waiting in the fridge at their house.

The origin of the infection still isn't clear, so she's still on a high powered non specific antibiotic. We do know that it's a gram negative rod bacteria that's causing the infection, which makes me feel slightly better that it's not staph. Having taken microbiology as an undergraduate, I'm terrified of hospital-grade staph infections. Though, really, any hospital-grade infection scares the crap out of me. I don't like this situation, even though it means that Dad's eating well, that everyone has less distance to travel, that the nursing care is a little more reactive and assertive. I don't like that her stay keeps getting extended and that the yeast infection is going on. I think I also don't like that all of this is going on and I'm not there. Tomorrow is two weeks since I've been home, which has been my max time away since the diagnosis. I'm trying to make it another week-I have lots of appointments that I really should keep if possible, but it's hard. I'm sure you're all tired of my "I'm so torn" refrain, but, yeah, I'm so torn.

The other thing that I really don't like is that her new surgically implanted IV line isn't working properly. It's supposed to allow blood to be drawn and IVs to go in. It's only working for things going in (like antibiotics, which is essential); blood can't be drawn out. But of course they need blood draws to assess the infection status. So Mom's getting a lot of needle sticks. I'm actually sort of furious about it: she had to have surgery to have it put in and it's malfunctioning. I really don't want her to have to go through any pain or discomfort that isn't absolutely necessary, and this seems like some sort of stupid f* up on someone's part and it's frustrating. They aren't going to fix it-another surgery is risky at this point in time and the hope is to reinsert the chest port if/when the infections clear up. So, needle sticks are in the cards for at least another few days.

On the bright side, Mom seems better. She's eating really well (the yeast isn't interfering too much with her swallow right now), she's napping a lot through out the day, she's getting excited about the wedding and what she's going to wear...her attitude is good. I think she knows that the infections are a serious set back and it's one more thing that she's putting her energy into beating. And as Gary loves to say, once Mom puts her mind to something, it's happening.

2.18.11

AYNSLEY:
My parents are still at Overlake and will stay at least through tomorrow. Which means that Dad is eating well these days, if not sleeping well. The rest of last night was a bit rough: Mom had her CT scan around 9pm and couldn't eat before because she had to drink a barium solution to create contrast for the CT scan. And she had surgery today to take out the port, so she couldn't eat for 12 hours before that. So there was an hour window where she could eat from 11pm to midnight. She managed a quarter of a turkey sandwich, but that was about it.

This morning she had the port removed and a line put into her arm. The doctors still don't know the cause of the infection, though the leading hypothesis is that it's a urinary tract infection. She's on targeted antibiotics and all of the doctors are expecting it to clear up without complications. The surgery went well and they're hoping to be able to put the port back in once all signs of infection are gone.

The other thing that needs to wait until the infection is cleared up is chemotherapy. So, not only will Mom have a break from systemic chemo, she'll have a break from the intrathecal. No one wants to risk a brain infection.

And now, the best news of all. I'm taking everything in stride and trying to react with cautious optimism, but our oncologist decided to check out the CT scan results today. Mom was supposed to have one more systemic chemo treatment next Tuesday, then wait a week for a CT scan to see if/how the chemo has been working and what all of the tumors are up to. But since she had one yesterday to check for infectious abscesses, Dr. C decided to see if anything tumor related showed up, also. It did. They're smaller. All of them. The metastatic tumors, the breast tumors, everything is responding to treatment.

Now, this is just what it is. It's not miraculous, it's not spontaneous healing, it doesn't change the prognosis. But it does mean that she's responding to treatment. It does mean that all of the discomfort, the nausea, the fatigue, is serving a purpose. It's incredibly motivating to Mom, she sounded better tongiht than she has in weeks. I know that, in her deepest heart, she's been questioning if this fight will work. And now she knows that she's beating things back and hopefully gaining more time. And though an infection is never a good thing, she knows that she's getting a break from chemo without fearing that a week lapse will send cancer into her organs. It's moving the right direction.

In addition to gaining even more of a positive attitude, she's also developed quite an appetite tonight. Ross is texting me now her dinner: soup, salad, chicken, beets, avocado, peppers, and blueberries. And she's requesting some cheese, too! I hope that she won't eat herself sick tonight! I hope that both of my parents are able to sleep a bit easier tonight, with less worry and therefore sleep more soundly. I hope that in the next weeks, she'll fight the infection and maintain or even increase this appetite and be able to make big gains in physical and occupational therapy. I hope this positive, forward moving momentum lasts.

2.17.11

AYNSLEY:
Mom was admitted to Overlake last night/this morning around midnight. They started an IV of antibiotics, but don't know where the infection originated or where it is now. Later tonight she'll have a CT scan to check things out. Tomorrow the port will come out of her chest-there's definitely some infection going on around there, so the doctors feel it's best to get the port out. They put a line in her arm that is supposed to do much of the same thing the chest port did, except be used for drawing blood.

I'm not sure how in depth I've gone about the chest port, but it was put in to eliminate the need for any IVs in her arm. She would get all IV medicines (including chemo) and fluids through it and any time she needed to have blood drawn, it came out of that. It was a really great thing while it lasted because she wasn't tethered to lines by the arm and she didn't have to have any needle sticks.

Mom also needs to have an EKG to make sure the infection isn't in her heart valves, which is a very rare possibility. But this cancer is pretty rare and her blindness as a result of it is really rare, so I take the "it's a very remote possibility" assurances with heaps of salt.

I'm not sure what this means for the chemo schedule; I am assuming that it will be disrupted and re-evaluated. I'm also not sure if the CT scan can also tell us anything about the state of the cancer and the effects of the chemo so far. We were going to have a CT scan after her next chemo treatment, so maybe this will double our investment? Or not, I really have no idea about these things. And when I was asking my dad a little bit tonight, he told me I sounded like an attorney and not in a good way. It's hard to be a control freak when the situation you want to control is 3000 miles away and 3 hours behind.

I'm learning.

Despite the obvious setbacks and discomfort, I think both of my parents aren't terribly unhappy to be back in their old Overlake wing. They know all of the staff (who, of course, have all been stopping by to say hi and check in), they know the routines, they like the food-seriously, this little hospital stay may be the best my dad's eaten in weeks. I mentioned that while he was there, he might as well enjoy a bagel and lox and he replied that he'd already had it. They think they'll probably stay through Saturday, but everything is still up in the air. I'm sure we need all of the test results to be in before any decisions are made. In the meantime, Mom's room at KGH is being held for them.

In other, personal news, I've decided that being paralytic about Gary's and my wedding isn't doing anyone any good (okay, I had some help deciding this-I'm very blessed to be surrounded by brilliant people who can help me see beyond my own myopic little world) and we've decided to just set a date and hope for the best. It's not ideal and the venue may still change, but I realized that plan it or not, the time will pass and I'll have to do something eventually. So, it will be much smaller scale in all factors: guest list, celebration duration, festivities, food, etc. Well, it won't be smaller scale on the emotion level: I think the conscious love and appreciation for family and friends in that room will far exceed any of the original plans we ever could had made.

http://www.aynsleyandgary.com/

2.16.11

AYNSLEY:

Mom is back at the hospital. Around 10pm last night, she asked my dad for a hot water bottle for her stomach (which she sometimes uses for stomach discomfort). He called a nurse, but when one didn't come right away, he went to the nurse's station to find someone. When they came back to the room a few minutes later, Mom was shivering so violently they thought she was having a seizure. It turned out to be chills from a fever (101) and she promptly went to Urgent Care at Group Health (right next door to Overlake) where they ran blood tests and x rays. She was given Tylenol to reduce the fever and when it came down, she and Dad went back to KGH, arriving around 2am. She slept the rest of the night and on and off throughout the day today. Around 2pm, Group Health called with the results of the blood tests: an infection. So back they went to Urgent Care and are now waiting to see if she'll be admitted back to Overlake.

They did four blood draws last night: two from her chest port and two from her arm. The two from her arm came back negative for infection, but the two from the port came back positive. Am I a sucker for thinking that this isn't horrible news? That maybe there's a local infection near the surgical site, but it hasn't spread and maybe it will be managed easily by antibiotics? That's my hope anyway.

Last week (or maybe the week before) the New York Times magazine ran an article about Web MD and the Mayo Clinic website, basically saying Web MD is the most evil thing around and Maya Clinic is fabulous. So, I looked up chemo and infections on the Mayo Clinic website (not going to touch Web MD-I do NOT need to freak myself out any more than I am already) and it said it's common risk with chemo. It's dangerous because it can interfere with the chemo schedule.

Today I bought plane tickets home for February 27th and am hoping that I can still use those, but am standing by in case I need to go sooner.

Mom isn't in any pain right now, just exhausted. Her temperature is 99 now, without any Tylenol or other fever reducer in the last 12 (or more) hours. Two friends are also with my parents now-when I told Gary which ones, he sort of laughed and said, "well, that couldn't be any more perfect." So, I'm going to try to sleep tonight, knowing both of my parents are in the best possible hands.

2.15.11

AYNSLEY:
I received so many precious gifts today. It was honestly an amazing day. Perhaps whiplash from Valentine's Day? Everyone was a little over-saccharined from all the commercial crap, so they turned their cheek to face true sweetness and I was the lucky recipient of the over abundance? Whatever the reason, I feel it all. You all are, of course, the bearers of these gifts and just please know you have my eternal gratitude.


Gift One:
The Manifesto of Encouragement (excerpts) From Danielle LaPorte of whitehottruth.com

right now:

• There are Tibetan Buddhist monks in a temple in the Himalayas endlessly reciting mantras for the cessation of your suffering and for the flourishing of your happiness.


• Someone is writing a book that you will read in the next two years that will change how you look at life.


• Nuns in the Alps are in endless vigil, praying for the Holy Spirit to alight the hearts of all of God's children.


• A farmer is looking at his organic crops and whispering, "nourish them."


• Someone is willing to lend you money, wants to know what your favourite food is, and treat you to a movie.


• Someone in your orbit has something immensely valuable to give you -- for free.


• Something is being invented this year that will change how your generation lives, communicates, heals and passes on.


• The next great song is being rehearsed.


• Thousands of people are in yoga classes right now intentionally sending light out from their heart chakras and wrapping it around the earth.


• Millions of children are assuming that everything is amazing and will always be that way.


• Someone is in profound pain, and a few months from now, they'll be thriving like never before. They just can't see it from where they're at.


• Someone just this second wished for world peace, in earnest.


• Someone is regaining their sanity. Someone is coming back from the dead. Someone is genuinely forgiving the seemingly unforgivable. Someone is curing the incurable.

How many times have I been that person in yoga class, sealing my practice with the mediation "may all beings be healthy, may all beings be happy, may all beings be whole"? Countless. And to just be reminded that there are countless people putting that energy into the universe right now...a beautiful gift.

Gift Two: gorgeous clumsy love

A dear one shared an experience a friend of his has been having with their mother, who is also gravely ill and has also lost many of the things we take for granted. She has also been cared for by her adoring husband, and wanted to give him a card for Valentines Day; she could only manage to draw wobbly hearts where she wanted to write poetry. And yet, as frustrating as that is, to know what you've lost and not be able to reclaim it...we are still so capable of loving and receiving love. Imperfect. Clumsy. Gorgeous.

Gifts Three, Four And Five:

A friend made arrangements for her housekeeper to come clean our apartment. Another cancelled plans for Costa Rica to be at our wedding in the Seattle rainy reason. Another made arrangements for me to have easy access to flights back and forth, and back and forth.

My phone just keeps buzzing; every time I get an email, a text or a phone call, it's someone else giving me something huge and amazing. It's a major karmic imbalance-I have not put out nearly a fraction of this goodwill into the world, yet I am receiving so much. And then I realize-it's not a reflection of anything I've given. It's all about what Mom has done. I'm reaping what she's sown, and my interpretation of that is that it's not a karmic imbalance after all. It's merely an investment that I now owe back, to my mom, my family and the world.

We lend strength when we are able, and we take strength when we need it. What a realization that there's exactly enough to go around.

2.14.11

AYNSLEY:
Chemo pre-treatment is quite a cocktail. Each time Mom goes in for her Taxol treatment, she gets a magic elixir of who knows what. Benadryl, anti-nausea, pain medicine, steroids, and something that makes her beyond loopy. The last time she had Taxol was two weeks ago, and both Gary and I were in town to be able to enjoy the show. Today, I got it over the air waves, but it was no less spectacular. She animatedly talks in paragraphs about topics that I can't follow, then ends with a random question: "so, do you have to wake up for that at 5 tomorrow morning?" "Nope, I can sleep until about 7 tomorrow." "Oh, that's great, honey!"

Tonight, as I write this, she is hosting her book group. The group decided to read a collection of short stories, and Mom has them on her iphone, so she's been able to "read" too. I know she was looking forward to having them all with her and having some part of her normal life keep going as normal. Listening to NPR, reading and discussing with book club, talking about everyday life stuff, these are all crucial to her sanity and I'm so glad that her friends don't even think twice about indulging it. One of my uncles has made it his mission to make Mom laugh every day and will stop at nothing to make it happen (not that it's difficult, he's pretty gifted, comedy-wise). I LOVE this-what could be more healing than taking time each day to laugh, to see the ridiculousness of life and simply, purely enjoy it.

Last night was a rough night. After a great day of feeling well, she couldn't eat dinner and vomited her pills and all the liquids in her stomach. I don't think she got much sleep, which is a rough way to start round two of chemo. I know my dad didn't get much sleep, which is par for the course.

This is the 60th entry of this blog. There have been occasional mulit-day posts, but we didn't start the blog until a few days after the diagnosis and hospital admittance; basically, my dad hasn't slept more than three hours in a row in over 60 days. Neither has my mom, but she at least has been getting in solid naps throughout the days. Again, this question of sustainability creeps into my head. How much longer can he do this before he gets sick? And how much longer will I be able to split my life between the two coasts?

We'll all cross those bridges as they come. For now, I'm hoping for a good night and a very restful day tomorrow, hopefully without too many negative side effects from the chemo.

2.13.11

AYNSLEY:

Mom sounded great today! She ate well, wasn't sick, had lots of energy and entertained lots of visitors. One of her friends brought by more cranes today-we've been receiving them for over a month now and some people have gotten very creative. I'm not sure how well the photo on the bottom shows them off, but those are crane flowers in the middle and look beautiful. The photo on the top is the wall behind her bed-there are tons of cranes creating a backdrop (and the awesome scarf that's hanging to the far left is handmade by my future mother in law-so pretty!). As you can see, her room is a virtual cocoon of healing wishes. She is so enveloped in love, prayers and goodwill.

The best part of the day was just talking with her about normal stuff. I used to have the habit of calling her anytime I was walking for more than 10 minutes, just to fill her in on the day, and more recently, talk wedding shop. Since she's been sick, this obviously hasn't been happening. On the one hand, half of the time I'm physically with her, so I don't need to call. On the other hand, now when I'm walking to the subway, or just taking a walk on a break from work, I miss her bitterly. But today she asked me what I was working on. So I told her about a grant I had received to run a new fitness program at the Y and how I've been working on a lot of home study and how it's a really amazing exercise program (if you're interested, check out fitnessanywhere.com), I told her about acupuncture, I told her I still haven't found a wedding dress, I told her about the enormous roach in our apartment and how I wasn't sure who screeched louder: me or Gary. (Ok, for the record, I screamed louder. I tried to smash it with a shoe, but the first one I grabbed was Gary's dress shoe and he wouldn't let me kill it with that. So I used one of his sneakers, and he grabbed my hockey stick-not sure which one of us finished the roach off, but I wouldn't touch the corpse, so Gary threw it out. I like that we both used weaponry that belonged to the other person. Gearing up for married life, I guess.)

I have been so thankful for all of the generous notes, emails, texts and blog posts: so many people have responded to my worries with real words of wisdom and love. And good things to keep in mind. For all of you who have thanked Ross and me for the blog...you have no idea. Thank YOU for reading, for keeping us in your hearts and Mom in your prayers. For keeping Dad fed, keeping Mom company, making the room beautiful and keeping me (relatively) sane.

2.12.11

AYNSLEY:
There are times when Mom gets confused and I don't understand it. Since getting sick, she hasn't been able to recall the year. When asked, she'll always begin "19..." then pause, and sort of laugh at herself before realizing we're in the 2000's. But then she won't be able to find 2011. She knows the days of the week and the month, but not the year. Very odd. And tonight she couldn't remember plans that we had gone over a couple of times. I don't know if it was because we were talking about things right after she woke up or if there is something going on in the timing region of her brain that is interfering with those kinds of things. But it's something and it worries me.

Though everything worries me. I worry when she doesn't eat enough, I worry when she doesn't rest enough and then I worry if she sleeps too much. I guess I'm just programmed to someday be a Jewish mother (even if I don't have kids, the obsessive worrying is still in my DNA). Mom told me that she ate well today: a friend brought over scrumptious things in the afternoon, so despite a modest breakfast, she got some good calories in her. When I asked how her stomach was feeling, though, she admitted that she wanted a break and didn't have an appetite for dinner. I think she's constantly less comfortable than she lets on and maybe that also alters her focus. I know if I'm in pain, specifics can become hazy. And it's got to be old by now-every day seeming the same, the only way to mark time passing is really by who's with her when, what food is being served and various therapies.

When we moved to the KGH, I admitted that I missed the hospital. Gary suspected that I missed the energy of the hospital more than the actual hospital, which is interesting. On a basic level, the hospital was high energy, emergency response, adrenaline-fueled. KGH is much more relaxed, slower paced, sustainable energy. If we can compare them to cities, the hospital was like New York and KGH is like Seattle. No wonder I felt more comfortable in the hospital. And we also were in phase one, with a phase two plan. Now, living in phase two, a phase three plan doesn't exist yet-who knows where Mom will be in a month, physically, emotionally or health-wise. There's no specific set goal that she's working towards. Everything is abstract: get better. But without specific, measurable outcome goals to achieve, it's impossible to tell when you're making progress.

So we're in limbo.

Strength and balance have much improved. So have appetite and stomach discomfort. But with round two of chemo beginning the day after tomorrow, who knows how long that will last. And if/when there are setbacks, how discouraged does it make sense to get? And, of course, the real concern is how the chemo is working. In about three weeks, we'll be able to take a look at where the cancer is now, how it's responding to treatment and if the chemo is worth it.

2.11.11

AYNSLEY:
Mom continues to kick ass in PT and OT. And today, in eating! YAY! I got several reports today of how much she ate, which has been so good to hear. For the record, the challah today was much enjoyed.

Today the main complaint was fatigue. Which makes sense, right? Looking at the busy day she had yesterday, plus today being up and eating so much, it means that the naps were less frequent. So the goal for tomorrow is more sleep. She doesn't have OT on the weekends, so that's one less sleep interruption. (Not to say that OT isn't essential, it's just that tomorrow she should be able to get rest, which is important, too). So, if you're planning on visiting tomorrow, please remember that you won't be able to chat if she's sleeping.

I'm hoping for a restful, comfortable weekend. Monday starts round two of chemo, which I'm already dreading, but hoping that with the new pain medicines and IV anti-nausea, this round doesn't take quite so much out of her. On a personal note, I'm looking forward to tomorrow, too. After work tomorrow, I will have two days off in a row before I go back for 7 days on, one day off, then another 5 days on and then probably back to Seattle. Very much looking forward to acupuncture, a long run, brunch with lovlies and maybe even a little bit of that elusive magical thing I hear stories of: sleep.

2.10.11

AYNSLEY:
By all accounts, a great day. Mom was able to get outside and enjoy some rare Seattle sunshine. Dad bundled her up, got her in the wheelchair and off they went on a walk. I didn't hear Dad's side of the story, but Mom said she had a wonderful time. The KG Home also had a visit from the local high school's jazz quartet. As Ross arrived for his visit, he first heard the music and knew Mom must be upstairs listening. He peeked into the room and saw her sitting in the wheelchair, bopping her head along.

Mom learned how to dance her head like Stevie Wonder in a yoga class and now employs the technique regularly. So please picture her, sitting in the wheelchair, doing the Stevie Wonder. To a high school jazz quartet. These are the images that I hold on to. You simply can't cry with despair when you have that image of her, still enjoying life, still the prettiest person in the room, savoring the beauty that's still available to her. And there is still so much that she can access.

She is looking forward to Shabbat tomorrow-easily her favorite thing to eat these days is challah and Friday nights are matzah ball soup and challah night. And I have no doubt that she'll eat a good amount of it. The nurse practitioner ordered an intravenous anti-nausea medication to come 30 minutes before meals-today was the first day it was delivered, and the staff kept sending it at the same time as the meals. So she would wait half an hour for the meal and just have things reheated. We're hoping they can get the timing better tomorrow, but even if they don't, just knowing that she's able to get and keep more food down per meal is great. She threw up her pills this morning, but that was it-breakfast stayed down.

Physical therapy was great today, too; she rode the bike for 10 minutes and did all of her exercises. She sounded tired when I spoke with her this evening, but considering how much action she had in her day, no wonder. I hope she gets a lot of rest tomorrow, but it is clear that she benefited from the break in the chemo this week.

So, I guess the question is how round two of chemo will go, which starts this coming Monday. I hope that she'll be able to continue to gain strength, that the anti-nausea medications will be available and work for her, and that she'll be able to get all of the rest she needs.

2.9.11

AYNSLEY:
Wow. I was so out of it last night, I wrote the date as January 8th instead of February 8th. And didn't notice it until tonight when I looked again at the blog stats.

Someone asked me how it felt to be back, assuming that now that I'm home, I have time to relax and am enjoying free time. Not exactly. Today is a good example of an average day: I taught a spinning class at 6:30am, went to work from 9:30am to 7:30pm, where I taught a sculpting class at 6:30pm, got home by 8:15, caught up with my parents for a half an hour, then caught up with Gary before he went to bed at 10. I'll probably get to sleep at midnight. Today was a good day: I didn't cry at all. Yesterday an adorable mother/daughter duo got on the train as I was going to work and I bawled the entire commute. They reminded me so much of May 2009 when Mom came to visit me for a week. I had just started dating Gary, had just moved into my very first solo apartment and was the happiest I've ever been. We went to IKEA, where she patiently waited out 3 of my meltdowns. We went to camp for Women's Wellness Weekend, where she outdanced me on Saturday night. She helped me decorate my apartment, I made her kale and eggs for breakfast; it was such a delicious time for us, blurring the mother/daughter line, crossing into true friends.

So now I'm trying to find the aspects of her strength and positive outlook in my DNA. I'm going to have to learn how to go to IKEA alone and put the meltdowns aside. I'm going to have to buy a wedding dress that she can't see, and she can't help me with, and trust that somewhere I must have absorbed her patience and perseverance. I won't pretend that I have anything close to her taste, but with enough patience, maybe it won't matter.

The good news of the day is that Mom is eating better. When I left, she was literally eating one bite of each item on her tray, and that was it. Maybe 6 bites of food a day. The past three days, she's been doing more than 6 bites at each meal. And this morning, those 6 bites were eggs and cheese, which I'm ecstatic about-I know she was loving the cream of wheat, but eggs and cheese are so much more calorie dense! Another positive is that she's now going to get an anti-nausea drug intravenously, which is great. Anything to reduce what she has to swallow is awesome. And they're going to increase her pain medication in the hopes that will help with her stomach discomfort as well. So, maybe she'll really be able to get a lot of food in her in the next couple of days. A couple of days ago, she said she would love to be able to eat an entire challah-it's not her appetite that's preventing her, it's the stomach pain. So, here's to pain meds working, stomach/espohagus healing and eating an entire challah. Amen.

2.8.11

AYNSLEY:
Honestly, more of the same. Mom continues to be ruled by the physical that she can't control and by the emotional that she can. When it's an issue of mind over matter, her mind wins. She continues to make progress by leaps and bounds in physical therapy and occupational therapy. Today she walked farther than she ever has, and it was after doing all of the standing exercises. So she continues to push her strength and let her determination push the boundaries.

And when it's a physical issue that she can't positive-think her way out of, she falters. She vomits the entire contents of her stomach, which at this point is mostly bile and acid. She can't eat because it's too uncomfortable and now the food is tasting off: jello today was too salty. She couldn't do PT at 10am this morning because the nausea was too much to bear in a vertical position.

So she did PT at 5pm. After the nausea subsided, after visiting with friends and family, after drawing strength from wherever it is she's drawing strength from. So, are there setbacks? Constantly. But is she improving? Certainly on some level she is. Her endurance and stamina have grown exponentially. But at some point, she'll tap out. Food, in its most elemental aspect, is energy. And about 60% of our calorie needs go to simply running metabolic functions. The brain needs glucose to work properly. And as a nutritionist, and a daughter, I worry about that. Because I know how proud she is of all of the therapy accomplishments she's made. I can't bear to see that be taken from her, too.

2.7.11

AYNSLEY:

My parents were able to speak with the oncologist today, and get some questions answered. For example:

Q: Why does Mom have a huge rash that looks like a severe sunburn on her chest, throat and face?

A: It's called a "recall rash" and it's a residual result of radiation. It doesn't itch or hurt, but it does crack and bleed occasionally.

Q: When will we be able to assess if the systemic treatment is working?

A: After two full rounds of Taxol. A round is a 3 week segment of 2 weeks receiving treatment and 1 week rest. We are in the final week of our first treatment, which puts us at scheduling a diagnostic MRI or CT scan the first week of March.

Q: Why is Mom having trouble swallowing?
A: Good question! (Or, as the oncologist says, "that's a head scratcher.") Mom had a barium swallow test today to see if there was anything obstructing her esophagus. The good news is that there is not an obstruction. The bad news is that they don't know why it's so sore and raw. The going hypothesis is that it's also a result of radiation, but the doctor wasn't willing to bet money on that answer.

By all reports, Mom looked good today. She certainly sounded good on the phone. She ate a decent amount of breakfast (which is half a serving of cream of wheat) and five bites of pasta at dinner. One bite of salad and one bite of soup. I'm guessing she weighs about 98 pounds. But she's in good spirits, enjoying her friends and still determined to eat. She said yesterday that she wished she could eat an entire challah, but the sore throat won't let her. She's not really nauseous any more, either, so once the throat stuff clears up, she should be able to get some good calories in her before next Monday's Taxol treatment. She started taking steroids again today in hopes of clearing up the rash and I'm hoping it will help with her throat, also.

Tonight on the phone she chastised me for sounding too stressed out. So, I'm following Mother's orders and going to sleep.

2.6.11

AYNSLEY:
More of the same. The pain in Mom's throat isn't in her throat anymore, it's traveled down her esophagus and seems to bother her at the top of her stomach. Her lack of appetite today wasn't due to nausea, it was due to extreme discomfort when swallowing. She describes it as being a result of taking all her pills, but I suspect that chemo may be playing a role, also.

It is so hard to watch.

A dear friend sent us an email this weekend, saying something about enduring the side effects of chemo by remembering that this is very strong medicine. So I'm choosing to focus on the hope that as harsh as the chemo is being to Mom's body, it's being harsher to the cancer. That this weakness, this discomfort, the constant sleeping and inability to eat are temporary and that the chemo will stop soon.

Tomorrow Dad will ask the oncologist if there's anything we can do about the throat/stomach pain. It seems that more and more medications are presented, which I understand, but it's hard for Mom to take the pills she has now; I hate to have to add. Though if they help in any significant way, we do it. More good news about the pain not being truly in her throat is that it's probably not an infection or a cold.

On a totally personal, unrelated note, I have gotten a lot of feedback about being the "kale queen." I've even had some people tell me they've tried kale for the first time since reading the blog. I know that today is arguably the national holiday of junk food, but maybe waking up tomorrow and throwing away the empty chip bags and recycling beer bottles will inspire you to try something green. A favorite way to eat kale, a la Claudia:
wash and dry the kale, separating the leaves from the stems. Sprinkle a bit of olive oil, salt and pepper on the leaves, put on a cookie or baking sheet and bake at 350 until the leaves get a bit brown on the edges, about ten minutes. Voila: kale chips!

marijuana clarification

AYNSLEY:
Hi all. It seems there has been some confusion with Mom and the Medical Marijuana (which is actually a funny name for a book...hmmm)

Anyway, the only marijuana that Mom is taking is a oral medication called Marinol. It's a prescription and it's taken by mouth, with water. No smoking, no magic brownies, just pills.

2.5.11

ROSS:

Mom's weekend physical therapist noticed some great improvements from this week compared to last. Which was great to hear considering she still has not been eating well. She might have had around 5 bites of food today. Her lack of eating is due to several things: lack of appetite, nausea, indigestion, and also, a sore throat. She believes this is a result of all the pills she has to swallow. I was really worried that she was getting a cold, but her symptoms seem to be getting better, and she is most likely not getting a cold. That being said, I really want to stress that all visitors pump some hand sanitizer on their hands before they touch mom (we've got some in the room)! I had to spend three days away from Kline Galland so I could get over a cold. It was really really hard to do. I really wanted to be there. I thought I could come and just put on a mask and sit in the corner, but mom wouldn't let me. She is the wiser of us. Now that I am feeling better, I am really glad that I wasn't here. I'm glad that I didn't compromise her health in anyway. It's a hard lesson to learn that sometimes the best thing you can do for someone is to be away from them.

We said goodbye to Aynsley tonight, which is always really hard. She is such a strong force and advocate for mom, and she runs a real tight ship (which is truly needed in this situation)! But Aynsley would not be Aynsley if it weren't for the life she leads in New York. People there need her, and we need her there too, so that when she returns, she can come refreshed and focused on being here for mom, and for all of us. Like I said, these are hard lessons to learn...

My main goal for tomorrow is to see her eating and drinking more. Please direct your thoughts and energy towards getting her appetite up. If anyone has some delicious food stories they would like to share (imagery, flavors, the best thing you ever cooked, any story revolving around food...), please feel free to share them here. Try to make her mouth water! I'll read her your stories and hopefully we can get her really excited about food. Let's get that appetite going!

2.4.11

AYNSLEY:

Another set back. Yesterday Mom woke up with a dry, sore throat that we thought (hoped?) was a result of the dry air in her room. This morning it was still there, a little bit worse but by tonight, it was bad. So bad that she couldn't swallow her pills. The nurse will take a culture tomorrow morning to see if it's an infection. Either way, it sucks. She's already so uncomfortable, and now this. Her immune system is compromised, so it's not surprising that she would catch a bug, but it's just bad news and we all hate to see her so uncomfortable.

This morning was the first morning she couldn't get breakfast down. No matter how lousy she felt, for the past two weeks, she has always been able to eat a good breakfast. She may not have eaten much the rest of the day, but breakfast was solid. Not today. Today she took two bites and was sick. The nausea diminished throughout the day; she was only sick in the morning and spent the rest of the day fairly un-queasy. But she only got a few bites of lunch and dinner in. The nurse practitioner (who is awesome, by the way) ordered her another fluid IV, which she hasn't had to have in about a week. But she's not getting enough fluids in to keep her safely hydrated, so back to the IV.

The physical therapist noted that she was stronger today than yesterday. I mentioned to Ross that the past two doses of systemic chemo that she had were closer together than they will normally be (Wednesday, then Monday, when moving forward it will be only Mondays and then a week off every three weeks) and that may be why she's feeling it so much. The oncologist told us the side effects would be cumulative, so it makes sense that she'd be worse this week than last week. The good news is that she doesn't need to have another system chemo treatment until February 14th. Which is a shitty was to spend Valentine's Day, but she usually feels pretty good on the day she gets the treatment, it's the third day after that it seems to really catch up. So I'm hopeful that she'll continue to get stronger and feel better throughout the next week and be strong for the next round of chemo. Maybe I'm making up medical rationales to make myself feel better, to help understand why she still feels so miserable. Maybe we're all grasping at straws, trying to keep hope. Maybe this truly is the ravages of chemo and once it takes it course, she'll have a break from the cancer and feel amazing. Maybe I should stop all of these maybes and focus on the moment.

Maybe tomorrow will be better. I really hope so.

My goals (hopes?) for her for the next couple of days are to have the sore throat clear up and not be anything scary serious and for her appetite to return. Tomorrow is my last day to spend with her for a couple of weeks. It's going to be so hard to leave. Gary always says I'm in an impossible situation, and it's true. How do you live a life that's split on two coasts, when you're needed 3,000 miles apart but at the same time?

2.3.11

AYNSLEY:

I booked my return flight home today: leaving very early Sunday morning to arrive home in time to go back to work on Monday after sleeping a full night. I feel relieved to be going home and horrible about leaving everyone here. But my life has gotten to be too much to manage from a distance and I know that all of our wonderful family and friends will step in during my brief absence. I hope to be back in three weeks.

Today was one of the days I predicted would come: worse before better. Mom slept nearly all day, but when she was awake, she was queasy and weaker. She still did PT and OT, but they were shorter sessions and she was tired. The OT session was at lunch and Mom ate precisely one bite of each food before succumbing to fatigue and nausea. She apologized to the therapist and went back to sleep. There wasn't any vomiting today, which was great, but she didn't get much food in, either. Once in a while, that's fine, of course, but we can't let it become a habit. She needs to keep her strength up.

We're all blaming chemo. And as crappy as she's feeling, she's still feeling better than before she was diagnosed, when she was in so much pain. She describes this feeling as almost morning sickness-ish, though of course without the rewards. The good news is that she has next week off from this chemo, so hopefully she'll start to feel better in the next couple of days and take the next week or so to really progress in physical therapy and occupational therapy. In the week she's been at KG, she's already gotten so much stronger. We all hope this will continue and maybe at some point she'll be able to really be an outpatient. Sadly, her vision hasn't changed, though we still refuse to accept that she'll be permanently blind. Yesterday the PT asked her what her goals were and she said "to get my vision back." So that's still Plan A.

2.2.11

AYNSLEY:

One of my favorite movies is Parenthood. You know, that old one with Steve Martin, Dianne Wiest and the delicious Keanu? Anyway, near the end of the movie, old grandma takes Steve Martin aside and tells him that when she went to the fair as a child, she liked the roller coaster. The merry-go-round just goes around the track, but the roller coaster gives you highs and lows. In the next scene, everything is going wrong and Steve's about to lose it when, all of a sudden, he chills out and realizes he's just on the roller coaster. It's a low. Then a high. Then twists, turns, drops, screams, laughter, tears and when it's over, you get in line to do it all over again.

When I graduated high school, Mom wrote me a poem. In it, she describes parenting: "just love and hang on." Now, maybe she was describing parenting me, which of course was a challenge, but I think that's really the best analogy to describe family. It's all we can do. Everything along this ride has been a roller coaster, but no one has ever considered getting off for even one moment. People have told my brother and dad and I that we are admirable for doing what we're doing. What on earth is our choice? Mom can't stand up on her own, of course we'll be there to help her up. No one signs up for this role, you are assigned it at random and you rise to the occasion. It's love. Just hang on.

I've learned a lot about family; that it's not defined by blood, it's defined by unconditional love. It's defined by choosing who you're going to support and show up for and how so so blessed I am to have so many people happily show up for me. All 50 of the people at Mom's birthday party offered to take Gary to the airport on a Monday afternoon and were disappointed when I told them I was going to do it.

I've learned about hope and how fragile and fluid it can seem, but how contagious it is. Every person who has emailed a story of remission or living with cancer seems to somehow sense that I need it right then: I've had a number of "losing it" moments derailed by my inbox signaling yet another beautiful story of life triumphing. I have watched my mom's faith falter, watched her slowly begin to accept this reality, watched her mourn her previous, healthy existence and feel fear. But she never lets the fear take root. She never doubts that she is doing the right thing, that fighting with everything she has is the only option, living is the only choice.

And fight she does. This morning she insisted on eating breakfast sitting up on the side of the bed, which is a great (and difficult) endurance exercise for her. She ate her entire bowl of cereal that had been mixed with protein powder, plus some bites of croissant and hard boiled egg this way. And then she went walking. 90 feet today, almost double what she did yesterday. The physical therapist kept giving her rest options and she wouldn't take them, she kept standing instead of sitting, did 12 squats instead of 10 and a second set of the dreaded calf raises. After the session, she slept. Lunch wasn't too tasty to her today, so she just had a few bites of snacks for the rest of the day. Then occupational therapy, where they worked on feeding herself and general upper body strength. Tomorrow's OT session is set for lunch time so they can work in depth on self feeding and get her some practical applications. I love the therapy staff here-they are amazing. So talented and caring and generous and wonderful.

Chemo is making its presence known. Mom is definitely tired-she slept a lot today, around working hard in her therapy sessions. She also vomited up the few bites of dinner she managed to eat (again, sitting up on the side of the bed) before nausea overtook her. She is on anti-nausea medication, but she's probably going to need to up the dosage or be more diligent about taking it at regular intervals. The good news is that after she was sick, she felt better. She didn't eat anything after that, but her mood was good and her pain was negligible. Oh, and I didn't faint. But we're gearing up for a long haul of chemo symptoms and know she'll probably get worse before she gets better. I keep reminding her that any time she wants a break, any time she wants to stop a treatment, if it gets uncomfortable or she just can't deal anymore, it's okay and we'll all support her. I'll be her advocate in anything she chooses. It's all I know how to do. Just love and hang on.

2.1.11

FLYNNE:

Once again, I am lost on the days. The days get so long in here, I have trouble distinguishing when one ends and one begins. I seem to remember a good night last night: we got a fair amount of sleep and didn't have to wake up too early. I had my cream of wheat and peaches for breakfast. They also had what we believed was a hard boiled egg, and I know I need protein, so I told Bob I would have some of the egg. He went to start unpeeling the egg, hemming and hawing, not able to get the shell off, so I said sometimes the shell comes off easier if you put it under water. So he tried that, and got the shell off and handed me a bite: it was a gelatinous mess. I must remind you that I am in a Jewish convalescent home: they had made a soft boiled egg and not told us. So, here we had a soft boiled egg going all over the place and my poor husband didn't even know what a soft boiled egg was!

After that, I took my first bath at the KGH, which was a pleasant experience; I felt so much better afterwards. The bath itself was pretty uneventful. After that, I had physical therapy. I worked with a new therapist who had some good pointers for me on balance and getting more control of different parts of my body. Both the therapist and session were really good; I really learn different things from each different therapist; they are all excellent in different ways. I went walking with her a long way: 55 feet! We walked to the gym and did the parallel bars: walking and calf raises without a walker. Then I did lunch-soup, chicken with olives and tomato sauce and lots of orzo salad. Then I napped for about an hour and a half. I was having apple slices when they came in for occupational therapy. I felt that I did well in OT: still working as much as I can to strengthen and keep my flexibility.

You know, I'm still receiving so many good wishes and cranes and just everything. You guys have been so supportive and it's really nice to hear from you. I've received so many beautiful messages from all of you and just appreciate it so much.