Monday, May 30, 2011

5.30.11

AYNSLEY:
Last night was wonderful. Mom and I went to sleep around 9:15, woke up at 10:30 to use the bathroom, then slept through until 6:45am. Mom then went back to sleep until about 8:30. Needless to say, we both slept well, then had the entire morning to ourselves. We had lots of visitors again today, but no one came until after noon. So, I had Mom to myself for breakfast (she feeds herself an entire bowl of Cheerios and bananas), then we did about an hour of yoga stretches. Mom has lost a lot of flexibility, but is determined not to lose any more. We did a lot of hip opening, twists, hamstring lengthening, heart opening, throat lengthening and shoulder relaxation. Then Mom flipped over onto her hands and knees and did some cat/cows and child's pose.

We had lots of time for girl talk before lunch-we split Mom's hamburger and baked beans.

Mom spent most of the afternoon outside on the front lawn. We had tons of fun guests, including a dear one of mine and her two adorable boys. The boys ran and played; the sound of kids having fun is is such a healing sound and we all benefited from just being around that very different energy. Another childhood friend of Mom's who's been with us all weekend added a lot of fun stories about the shenanigans that they used to get into: jumping off her two story house with umbrellas playing "Mary Poppins," climbing trees to the highest bough and then crawling out to the very end of the branch and swinging in the trees, sliding down the stairs in cardboard boxes. Mom has clearly always been one brave broad.

I apologize, but there probably won't be a post tomorrow. Gary and I are flying back home and won't arrive until late at night and we both have to work on Wednesday. We'll be back with the Wednesday update, including Mom's radiation appointment. She begins treatment on Thursday, but is going on Wednesday for preliminary work.




Sunday, May 29, 2011

5.29.11

AYNSLEY:
We were completely inundated with visitors today, it was glorious. And overall, Mom had a great day. When Gary and I arrived this morning, she and Dad were listening to NPR, laughing and having a great morning. We chatted a bit, I helped Mom with some hamstring and ankle stretching and then Mom decided she wanted to go for a walk. So, we got the walker out and walked at a brisk pace up and down the hallways. Almost as soon as we got back, though, she got super nauseous and needed a bit of a rest. It passed within the hour and she went back to entertaining all of her guests.

There were a couple of napping opportunities during the day, between visitors, that Mom took advantage of. Tonight is girl's slumber party, and we'll be hitting the hay by 9:30pm (I'm still on EST). Fingers crossed that tomorrow is nice enough to play outside a bit.

5.28.11

ROSS:
Well Aynsley and Gary made their standby flight, and on memorial day weekend! We are so happy to see them! Mom had a pretty strong day yesterday. We got to sit in the sun for a while, she ate well and took a long nap in the middle of the day. Another dear friend from childhood has come in to say hello, and everyone is having a great time together.

Just so you all know, there are now three teams for the Seattle Race for the Cure. All three teams are walking and raising money for the millions of women and family members fighting breast cancer. If you live far away or you cannot join us for the walk on June 5th, please consider donating to one of our teams in honor of my mom. Any amount, small or large, makes a huge difference for all those impacted by this disease. I can tell you, if it were not for the advancements in breast cancer treatment, understanding and technology made possible by events like this, my mom would not be alive today. Help us and the millions of others fighting breast cancer continue the fight! If you're able, please consider donating to one of the following teams by clicking the team name below:

Team Flynne-a team started by my mom's Random Acts of Kindness group.

Sisterhood of the Traveling Wool-a team started by the makers of mom's healing quilt.

Flynny-Flynne-Flynne
-a team started by "the kids"

Thank you so much for all your love and support!

Friday, May 27, 2011

5.27.11

AYNSLEY:
Today Mom and Dad met with the radiation oncologist to discuss possible treatment for the cancer metastasis/rash. Mom had a CT scan of the area, and after examining it, the doctor thought that radiation could really help. It will most likely stop it from spreading and may even make it go away, or reduce it. The course of treatment is 5 days a week for three weeks; she'll start radiation on Thursday, but go in on Wednesday to get the positioning set up. Radiation is all vectors, coordinates and math. Fascinating.

We all adore this radiation oncology team. It's the same team that did the initial radiation on Mom's spine and skull and they are such compassionate, kind and brilliant people. Of course I wish we didn't have to work with any doctors again, but if she needs treatment, I'm so glad it's what they offer.

The best thing about the treatment is that Dad is driving there: no ambulance. Mom just wheels out to the car and sits in the front seat. I find this so cute and a measure of how much stronger she's gotten. It's such a slice of normal life, driving together, and it's something they haven't been able to do in so long.

Gary and I are flying standby on a full flight tomorrow morning and I am so hopeful that we get on that plane. Gary hasn't been back since our wedding and it's always so nice for all of the Kirshenbaums to have him there. (Not that I'd go without him if there's only one spot, I just hope we both get on the early flight). So, even though I'm well aware that I've pushed my luck and had more wishes granted in the past 5 months than I deserve, I'm hoping for another one.

Thursday, May 26, 2011

5.26.11

AYNSLEY:
I feel, at times, that my words are inadequate. Or repetitive, dull and boring. And it dawns on me that so many have written things that speak to my heart and can convey, much more eloquently, what I feel.

So, here's Emily Dickinson. I so apologize that I haven't thought to post her (and so many others') words until now.
Hope is the Thing with Feathers

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

Wednesday, May 25, 2011

5.25.11

AYNSLEY:
Mom sounded so good on the phone tonight. She was eating dinner and entertaining a small crowd of family visitors. I didn't get much of a report, but I took that as a good sign: she was having too good a time to relate the mundane details of the day.

She has an appointment with the radiation oncologist on Friday morning. We don't really know the details of the skin metastasis; if it will grow, if it means other metastases may happen faster, if radiation will stop the spread or get rid of it completely...we're hopeful that the radiation oncologist will be able to answer all of those questions and help us understand if Mom is a good candidate for more radiation. In the meantime, Mom continues to push herself to eat and exercise and takes delight in all her visitors.

Tuesday, May 24, 2011

5.24.11

AYNSLEY:
This morning did not begin well. Mom threw up her pills, couldn't eat breakfast and could barely get lunch down. But by the afternoon, she was feeling much less nauseous and her stomach wasn't so gassy. So she pushed herself to go for a long walk and ride the bike for 12 minutes. When I asked her if she exercised because she was feeling better or if she had to push herself, she admitted that she really had to push. "But I knew I needed to walk today, and once I started, I kept going, and then rode the bike."

For any of you out there who struggle with motivation to go to the gym, personal trainers will tell you to commit to 10 minutes. Even if you really don't feel like exercising, promise yourself that you will do whatever it is you need to do for 10 minutes. If, after 10 minutes, you are miserable and want to quit, fine. Go home knowing you did 10 minutes more than you would have. The trick is that 99% of the time, once you're there and in the thick of it, you're not going to quit after 10 minutes. You're going to finish your work out. Mom proved this today. She just needed to get herself out of bed and walking, and then she was ready to go. She walked, rode the bike for a long time (and, I should mention, the therapists keep increasing the resistance level on the bikes) and then did a bunch of floor exercises.

Also, today we found out that The Sisterhood of the Traveling Wool is in the top 10 Fund Raising teams in Seattle's Race for the Cure. You are all so amazing! We are all overwhelmed everyday with gratitude

Monday, May 23, 2011

5.23.11

AYNSLEY:
This morning I got an email from one of Mom's weekend visitors saying what a nice time she had and that she suspected that the girls all wore Mom out. Well, she was right. Mom napped a ton today. She was awake and alert this morning and early afternoon and had an intense PT session with walking and stretching, but by later in the afternoon, she was pooped. She's still feeling good, just tired. I suspect that the fatigue is from non stop high energy over the weekend, though a little part of me always get scared when she's so tired. That little nagging voice reminding me her liver has been infiltrated...

Gary and I are heading to Seattle for the long weekend. I'm sure I'll have a much better sense of Mom's energy then.

Sunday, May 22, 2011

5.22.11

AYNSLEY:
Today is 5 months since Mom's metastatic diagnosis. December 20th was when they knew for sure that she had breast cancer, but December 22 was when they discovered it in her CSF and bones. Those first days were so heart wrenching: she moaned through her sleep, had visual and auditory hallucinations, endured surgery after surgery and slurred her speech.

And now, 5 months later, her speech is clear as a bell, her sleep is undisturbed, and her strength increases every day. And the cancer has spread to vital organs. I don't know what these new metastases mean for her comfort. Now that the cancer is out of her CSF, she doesn't have pain from it. Now that she has been walking farther and without support, her lungs seem clear and strong; she gets tired after strenuous physical therapy sessions, but she never wheezes or gasps for air. It's always her muscles that are tired. The rash is itchy, but can be controlled for now with a cream that at least makes her comfortable enough to sleep.

Five months ago, we all whispered "quality of life." Now, clearly, she has a wonderful quality of life. It's not what she planned or expected, but like everything else with her, she's making the best of it.

Saturday, May 21, 2011

5.21.11

AYNSLEY:
Another girlfriend filled day for Mom. When I asked her if she walked today, she said she just didn't have time, she was too busy having fun with her friends. A near-perfect Saturday, really. Two more childhood friends came in this afternoon, so Mom really got a lot of happy memories revisited.

Friday, May 20, 2011

5.20.11

AYNSLEY:
One thing about the time change is that I miss things that happen in the evenings. Last night, well after I was in bed, one of Mom's co-workers (and very dear friend, and my almost birthday twin) stopped by to present Mom with some amazing gifts.

Apparently, someone in the office (I suspect the dear friend) made Flynne Buttons, which I gather are pins that have Mom's face on them that co-workers bring on adventures with them. Mom has "been" fly fishing, kayaking, hiking, out to fancy dinners and on stage being honored. They are going to Race for the Cure on June 5th. I'm trying to finagle one to come home with me, there are many places in NY that Mom loves and would like to go. She was also part of a team that won a Best of Bauer outfitter award, that her co-worker brought to my parents. (This was actual-it's an award from 2010-not just her button image.)

HOW CUTE IS MY MOM!?!?

She was not only mentioned in the team's acceptance speech, another co-worker made a poster with her picture on it for her walk-for-life event in Massachusetts. I was so blown away to see the emails from her coworkers this morning and was so rocked by the Flynne Button idea. Seriously, what a brilliant idea. You all know by now that I believe in the power of well wishing and that sending energy and strength is the greatest gift and the best medicine. What an honor to have Mom's image held by people who are participating in activities that bring them joy and make them feel alive.

One of the lessons that I've learned from my mom's illness is how to feel alive. How to thrill at the feeling of my heart pounding in my chest, how to savor each embrace with people I love, how to let go of bullshit that doesn't matter. This lesson is such a gift in my life. The thought of so many people getting even a taste of that gratitude and love of life by simply being reminded to live and enjoy brings me great joy.

And now, a word about girlfriends. Yesterday I was treated to a day of indulgence by some girlfriends as a bachelorette party. Yes, I realize that I'm technically an old married lady, but May was when we had originally planned for it, so we stuck to that. We went to a Korean day spa where we soaked naked in pools, ate decadent Korean food (clothed), sat in saunas of all different temperatures and mineral auras and then got scrubbed within an inch of our lives. All of this was lovely, but the best part was simply having all day to talk with these women. We are all in such different places in our lives, with different lessons to learn. We may be on similar life paths, or they just may be converging at this time in our lives. In either case, I learned so much just sitting and listening and, once again, felt overcome with gratitude and love for my life.

Today my mom is experiencing the same thing. She kicked my dad out of her room and sent him to the golf course with his brother and my brother. She spent to day surrounded by her girlfriends. Of course, the Seattle ladies and the visiting ladies are all getting along wonderfully and everyone is enjoying their own version of a bachelorette party, or a girl's weekend, or whatever you want to call it. These women have shared their lives: babies born, parents dying, bar and bat mitzvahs, graduations, college applications, crushing disappointments, staggering joys. Now they're sitting outside in the Seattle springtime sun, eating dinner, laughing together.
Tonight they may go home and cry. Mom's biopsy results came in showing that the skin rash is yet another metastasis. Or they may decide that crying isn't the right response. That spending this time together brings too much joy to cry. Too much of a reminder of the preciousness and fragility of all of us. Which is heartbreaking in such a glorious way.

Thursday, May 19, 2011

5.19.11

AYNSLEY:
Another strength jump: today Mom walked by herself. No walker, no one holding her hips to steady her, just walking alone down the hall. The PT was right there in case she needed help, but she didn't. Mom said she was extremely tired after the walk, but really happy with the progress.

Of course, she only does vigorous exercise when she's feeling well. Today, the nausea held back and Mom was able to eat, exercise, visit and maintain her sense of humor.

Tomorrow is a very special day: two of her childhood friends are coming to visit for the weekend. (and two more on Saturday!) I know she's super excited to see them and very much looking forward to this weekend with them. One visited last winter, when Mom was still in the hospital, so I'm really excited for her to see Mom's progress. It's always a bit thrilling to watch your own expectations get shattered (I know I am astounded the first day of each of my visits); I can't wait to hear what she thinks tomorrow evening!

Wednesday, May 18, 2011

5.18.11

AYNSLEY:
In Mom's words, today was a mixed bag. She wasn't feeling great most of the day, queasy and nauseous with minimal appetite. She ate a few bites of breakfast, felt sick, went to sleep. Then she walked a bit, sat outside in the sunshine and enjoyed a few bites of lunch with Ross and her BFF. Then another bout of nausea and fatigue, so another nap. In the late afternoon, she finally found her appetite and was able to eat a decent amount of leftover Pad Thai. Then another nap. I think the naps were due in equal parts to fatigue and stomach discomfort. I'm not sure what triggers her discomfort these days; if it's the new chemo, there doesn't seem to be a rhyme or reason for the side effects. One day she feels energetic and hungry, then the next she's sleeping all day.

I also suspect that she may be a little nervous about the biopsy results. It's unsettling in any case to have a mysterious medical condition and the last test brought such disappointing news. I think all of us are on edge a little bit, waiting for these biopsy results. Everyone in my family seems to be a little queasy today.

Tuesday, May 17, 2011

5.17.11

AYNSLEY:
A couple of days ago, Mom noticed something itching on her right side, on the torso and under her arm. The nurse practitioner took a look today and thought it looked weird, so she called the oncologist. Dr. C. thought it might be another metastasis, so Mom went to have it biopsied today.
I spent the day googling breast cancer rash, which, trust me, isn't that helpful.

We need to wait for the biopsy results. They should take anywhere from 1 to 3 days to come in. In the meantime, I need to stop letting my imagination run away from me (google is not good for this) and consider the facts: Mom felt really good today. She spent some time outside in the sun with a girlfriend, she ate 100% of her dinner last night, she was making jokes about the painkillers they gave her before doing the biopsy...even if this is another metastasis, it's not slowing her down immediately. We still have good days left.

Monday, May 16, 2011

5.16.11

AYNSLEY:
Today was pretty similar to yesterday: good moments and not so good moments. All of Mom's discomfort is stomach related (well, GI related, at least). She oscillates between nausea and cramping, with interludes of appetite and feeling well. I have no idea if this recent discomfort is due to the chemo or something else. When I asked Mom yesterday she laughed off the cause: "who knows what's causing what anymore? It could be any combination of any variety of factors." Which is true. I love that she laughed about it. Instead of being frustrated or angry, she just laughs. She's like the manifestation of the serenity prayer; she definitely has the wisdom to know the difference between what she and cannot change.

Sunday, May 15, 2011

5.15.11

AYNSLEY:
A lazy, rainy Sunday in Seattle. Mom felt queasy on and off all day-nothing too terrible, but overall not a fantastic day, health-wise. Though she did get to spend the day with family and close friends, which she enjoyed.

One of the newer developments is that Mom no longer gets IV fluids. We all love this because it means that Mom is able to drink enough throughout the day and it's one less artificial intervention. Dad also loves this because it means that the IV machine is not whirring all night, making it difficult for him to sleep. Last night, both my parents fell asleep listening to the sound of rain falling in the courtyard behind Mom's room. The soothing patter lasted all night, and all day today. Though it's always a little disappointing not to be able to go outside and feel the sunshine, some days it's nice to just be able to sit back, nap, enjoy books on tape, engaging conversation, and the sound of rain falling nearby.

Saturday, May 14, 2011

5.14.11

AYNSLEY:
I feel so fortunate to have the friends I have. Yesterday, I was struggling with when to go back to Seattle, how to schedule the partitioning of my life, how to control what little I have to left to control. This afternoon, I got a call from the wisest, dearest person I know (who hadn't read the blog) and was asking about my next trip out west. I was weighing the options with her, saying that it's hard to justify going back when Mom's so strong because I know the time will come when she's not strong and when she needs me more. And my dear one didn't hesitate. "Aynsley, be there when she's strong. That's the quality time. That's when you can have a relationship that's not about her being sick." Of course, she's right. It's fun to be there now. I don't have to feel like everything in my life needs to be a sacrifice or about some responsibility I have. I can go just for fun, to enjoy my family, to marvel at Mom's exponential strength gains, to go out to dinner with Seattle friends. And I can live my life in NY without feeling guilty. I chose New York. I love my life here: my home with my husband, my ridiculous hockey league, my wise and amazing friends, my enormously supportive in-laws.

I know all of our family and friends in Seattle are enjoying their time with Mom. And Mom is enjoying her time with all of them, too. Everyone brings something new and different to the table, allowing Mom to get to know her family and friends in ways that she may not have before. I definitely have. I have such a respect for everyone's dedication and continued outpourings of love. And I have enjoyed seeing this side of my mother. Ross and I were talking about it the last time I was in town. We had glimpses of this throughout our lives, but never knew the extent of her grit and perseverance until now.

Seattle Race for the Cure

It's Race for the Cure season! I've received numerous emails from friends around the country, sharing that they are running or walking this year in honor of Mom. THANKS ALL!!

When I lived in Seattle, Mom and I did it together many times. This year, there's a Sisterhood of the Traveling Wool team that's walking the 5K. If you live in the Seattle area, please consider taking a walk with an amazing group of people that day; they're registered as a co-ed walking group. If you don't live in Seattle but are interested in making a charitable contribution, you can click on the same link. Plus, there's a really cute picture of Mom

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

Friday, May 13, 2011

5.13.11

AYNSLEY:
For the first time since chemo last Tuesday, Mom had a good day! She exercised, ate well and has felt good all day so far.

When I spoke with her this evening, she asked about my weekend plans (work on Saturday, hockey on Sunday) and then about when I'm coming back to Seattle. It's hard to tell. I feel so torn. I have a finite amount of paid time off work, and though I hate missing so much time with my family, I feel like I need to protect those days. And it's hard to go back and forth for a few days. The reality is that the next trip I make will probably include Gary and will probably be only three days. Those trips are great, but hard. With the 9+ hours of travel, time change and work days off finagling, it's just hard. It's hard to keep my life going on both coasts. Some parts are wonderful: the time spent with my family and family friends, plus some great Seattle friends that I've been able to see so much more than I have in the past 6 years. And some parts aren't so wonderful. I realize that I sound like a spoiled brat, complaining about decisions that I willingly made and continue to make.

The truth is that hearing Mom ask when I'm coming back breaks my heart into a thousand pieces. I miss her. I miss her so much now, when I get to talk to her every day and some days spend 15 hours with her. And I know that, at some point, I won't have that. I won't have the option of even visiting, or hearing her voice. At some point in all of our lives, the people we love are gone.

5.12.11

AYNSLEY:
We didn't meant to worry anyone last night without a post: Google Blogger was down, so neither Ross nor I could access the posting page until now. Everything is okay.

Yesterday Mom had a great start to the day: strong breakfast, another physical therapy session involving the stairs and walking without a walker. She ate a big lunch and entertained some visitors. But after lunch, as seems to be the pattern this week, she started to feel nauseous and get a sharp stomach ache. She wasn't able to nap during the day, so she was just uncomfortable for a few hours. When we spoke, she was contemplating dinner-not hungry, but trying to eat anyway.

Her NP has increased her anti-nausea medication dose, which may be helping-her worst nauseous day was immediately after having the chemo and each day it seems to be a little less. But the stomach aches are still strong and fierce and seem to come every afternoon. I'm not sure if it has to do with the spacing of her meals, the timing of physical therapy or if there's something that she's doing right that makes it so the stomach aches aren't constant and are limited to the afternoons. Sometimes I have to remind myself how far she's come, how much pain she was in in those first few weeks. I'm lucky that I come to visit every couple of weeks and can see dramatic changes from my last trip. I get so frustrated that she's uncomfortable every afternoon, but really, it's a vast improvement from where she started.

Wednesday, May 11, 2011

5.11.11

AYNSLEY:
Just after I posted last night, Mom got really tired and nauseous. The rest of the night was pretty rough, but she slept a lot last night and had a good day today, hanging out with friends, eating well and exercising. But in the early evening, the nausea hit again. When I spoke with her, she was hunting for some saltines and saying it wasn't too bad (I'm guessing that means not as bad as last night).

So, here's hoping that this eases up and doesn't last all month.

Tuesday, May 10, 2011

5.10.11

AYNSLEY:
Mom began her new chemotherapy treatment today. Everything seemed to go very well and she spent the rest of the day feeling fine, if a little tired. The sun was out in Seattle, so my parents and Ross took a little pre-dinner sun soak; Mom sounded wonderful and was enjoying the fresh air and warmth.

In previous treatment rounds, Mom usually feels pretty good for a few days immediately after treatment, then really feels the fatigue and nausea. Since this dose is so powerful that it's given only once a month, we have no idea when and if the side effects will kick in, how bad they'll be and how long it will last. It's all a big game of wait and see, and hope for the best: strong therapeutic effects with minimal nasty ones.

Monday, May 9, 2011

5.9.11

AYNSLEY:
I flew back home today, but my flight was so early that I said goodbye to my parents last night. That was rough. I don't have set return plans, so it's hard to know when exactly I'll be back and what state Mom will be in then. It had been an emotional week and Mother's Day was sort of the culmination of that.

Mother's Day itself was great, though. Mom was energetic and upbeat, eating like a champ, entertaining visitors in the morning then hanging out with the family all afternoon. Mom had originally wanted to go out to eat (having eaten not just breakfast, but every meal for the past five months, in bed), but we realized that with a weakened immune system, a restaurant full of children (aka germ machines) probably wasn't the best idea. So we brought dinner in, and made a dining table out of two hospital tables and everyone sat and ate like a normal family. Mom has been making strides in feeding herself and has been doing quite well. It was really nice for my parents and Mom loved it.

Today we had two bouts of good news. The first is that Mom gained 3 pounds! She has been eating a lot more: bigger portions at meals and calorie-dense snacks. It's paying off; her stomach is noticeably more comfortable and she's stronger. The other good news is that in PT today, she walked stairs for the first time. Up 15 stairs to be exact, then back down. She said it was hard, but was clearly proud of herself.

Early tomorrow morning she goes back to Bellevue to begin her new chemotherapy treatment. This is planned for once a month, and we have no idea how Mom will tolerate it. All we can do is hope for mild side effects and a positive physical response. So, tumors: GO AWAY

Saturday, May 7, 2011

5.7.11

AYNSLEY:
A new thing today. After helping Mom walk back from the bathroom with her walker and getting back into bed, I turned away from her to put the walker and gait belt away. When I turned back, she was standing next to the bed. Standing alone, nothing to lean on, nothing to help her balance, nothing to help her propel out of bed. She simply stood up because she wanted to adjust her pants. Ross had been watching the whole time and was standing next to her, arms at the ready to catch her if needed. Of course she was fine. She adjusted her pants and sat back down, then climbed back into bed.

In the hospital, if she needed to roll to her side, we needed to use the draw cloth to roll her over. During my last trip, a week and a half ago, she couldn't stand without a walker. Now her balance and strength are amazing. I truly have able-bodied clients who couldn't stand up from seated without wobbling with their eyes closed and here she is, doing it like it's nothing.

I spent the night with her last night, my last night doing that of this trip. She didn't get into sleep mode until after 10pm, and then we heard shouts coming from either other floors or just outside (it was Friday night, after all). So I turned on the radio to jazz and we fell asleep to the soothing sounds of NRP, the IV machine and the clock ticking. I'm not being sarcastic, it's actually a symphony of soothing sounds to me (to Dad, it's more of a cacophony. He puts the clock in a drawer). A few hours later, when everything was quiet, I woke up and turned the radio off. Mom woke up twice in the night for bathroom trips and sips of water, but other than that, we slept well and slept late.

We did yoga stretches this morning after breakfast for about 20 minutes and later this afternoon she took a long walk up and down the hallways with her walker. She finally napped from 4-5pm, after eating a big lunch and lots of snacks.

There are two truths to this situation. The first is that she's obviously getting stronger and healthier every day. She constantly works hard to make gains and it shows. The other truth is that she has a very aggressive form of cancer that has infiltrated her essential organs. Logically, these two truths seem mutually exclusive and one would expect that if one were true, the other would need to be false. So I find myself back at this issue of hope. One of the social workers we spoke with this week was talking about chemotherapy and saying that many people don't want to stop it, because they have equated that with hope. But that treatment doesn't have to necessarily be so closely tied with hope. Stopping chemo isn't always surrender. And continuing to take medication after medication isn't always fighting with everything you've got.

I would argue that Mom has gotten stronger because she has hope that she can. The cancer isn't even a part of that, or the whole part of that. Standing up unassisted is as simple as believing she can do it.

Friday, May 6, 2011

5.6.11

AYNSLEY:
I mentioned yesterday that the CT results were disappointing. And they were. We have been inundated with emails, calls and texts today from family and friends who are all expressing their sorrow and heavy hearts at this news. Believe me, I take great comfort in the amazing and enormous support network we have. But I chose my words carefully: we were disappointed, not devastated.

Mom has been on an upswing in the past few weeks and today was no different. When I arrived this morning, she had been sitting upright in her armchair for almost two hours. She ate a great breakfast, then a good snack, then a big lunch. Then another snack. Then another aggressive PT session. Then, finally, a nap.

We had some great social work consultations today and our family rabbi came in to talk with Mom about how she's feeling about the CT results. She admitted that it does diminish her hope, but that she's accepted that her life will be shorter that she'd like and that death is another part of life. She's grieving. She mourning, but she's not depressed. There's a clear difference.

She also decided that she will go ahead with the new chemo (like we didn't see that one coming!) this coming Tuesday.

Keep in mind that in December, the doctors didn't expect her to make it to 2011. Every single lucid moment we've gotten since the diagnosis has been a gift.

Thursday, May 5, 2011

5.5.11

AYNSLEY:
Very disappointing results from the CT scan. The cancer has spread to Mom's lungs and liver. It has not diminished in her bones. The Taxol is not working.

Dr. C offered two courses of action moving forward: 1. a different chemotherapy drug (the name of which we can't remember right now) to be administered once a month, and 2. not continue with treatment. When he mentioned option #2, Mom yelped like she'd been pinched, "you mean just give up?" He didn't concede giving up, but talked instead about quality of life and how sometimes that's more beneficial than continuing treatment.

My biggest fear is that the chemo ends up shortening her life more than the cancer would. Between the nausea, fatigue, weakness and stomach upset that chemo brings and the speed of the cancer's spread, I don't know which is the better choice. I'm glad it's not my choice to make.

Mom cried the rest of the day. Dad and I took turns wrapped around her in bed, trying to hold the shaking and feeling helpless. This is the most upset I've seen my mom. Hearing the doctor say that a viable option is doing nothing shook her. She wasn't prepared for that answer. And I don't think she's prepared to accept that option, at least right now. She wants to research the proposed drug as much as possible (we're finding out the name tomorrow!), see if people have had any luck with it and see what side effects she's in for. But as of now, without any of that information, that's the route she seems to want to take.

We also had a visit from a social worker today who went over the different going home options. Basically, we have two benefits to choose from: palliative care, which is what we qualify for as long as Mom is having chemo, or hospice, which is what we qualify for if Mom isn't receiving chemo. The hospice benefits are far more inclusive than palliative care, which makes sense. At this point, she's thinking that she'd like to go home on a pass for a day or two and see how it goes. How it feels, what she needs, if it's scary...paying out of pocket for the Kline isn't sustainable for much longer, but we all need to evaluate the other options. Home would be great if it feels safe and comfortable and meals can be taken care of. But we have to see how that feels. There's definitely a level of comfort about being at kgh, where nurses are steps away, medications are distributed at regular intervals and meals are prepared. But the thought of both of my parents able to sleep at home, my dad in a real bed, without the constant whir of an IV, or someone disturbing them to check vital signs, or a neighboring resident's TV on level 11...I hope they'll be able to make the move soon.

Wednesday, May 4, 2011

5.4.11

AYNSLEY:
Another gorgeous day in Seattle. The day began with my parents heading over to Bellevue for Mom's CT scan. She received prep meds 13 hours before (9:30pm), 7 hours before (3:30am) and 1 hour before (9:30am) and then got an IV infusion at the testing site. The last CT scan she had, she had to drink a barium solution which made her so so so sick, so it was a relief for her to be able to have it via IV. Mom had been nervous about the scan because of that, so she was so happy to have everything be so much easier today. The CT scan took all of 15 minutes, and then back to the Kline.

Ross and I followed the ambulance back and arrived right at lunch time, which Mom ate at least 3/4 of (fried rice and an egg roll). Then she had an absolutely amazing PT session. She walked so far without the walker. SO far-all the way down the hall twice, then back to the gym to ride the bike for 10 minutes. Then on the mat for some assisted stretching. Then finally back to the room for a snack: an entire plate of left over pad thai. Then, finally, a nap. She slept very well for about an hour and a half, then decided that it was time to go outside. We took her up in the wheelchair and sat in the sunshine for almost an hour; the trees are all in bloom and Ross picked blossoms for her to smell.

Then a huge dinner (beef stew, potatoes, cake, cookies, cucumber salad, tea and a delicious mango puree/ginger ale cocktail) while we hung out with friends and family. After dinner Ross and Dad watched the Mariners and Mom mused that baseball always makes her hungry for peanuts. We didn't have any peanuts, so she made do with pistachios. Seriously, she ate so so well today-it was great.

I'm spending the night again tonight-hooray for girls' night!

Tuesday, May 3, 2011

5.3.11

AYNSLEY:
Last night I spent the night with Mom. We had a great night, asleep by 9pm, then up a few times to pee, but basically slept until 7am. I feel sort of guilty about it, but I always sleep a lot at the Kline with Mom. Probably because I'm always still a little bit on EST and can fall asleep at 9pm...

Today was another strong day. Mom ate well, exercised strong and was in good spirits. Today, as yesterday, she got very uncomfortable after lunch, with stomach cramps and sharp pains. A heating pad helped alleviate it and after about an hour and a half, she was feeling better. This morning she had a bath, which is one of my favorite activities. She was also weighed before her bath: still weighing in at 89 pounds. I guess this is good news in that she hasn't lost any more weight. We'd all like the weight to go back up, but stopping weight loss is the first step.

Tonight we had a great family dinner; Ross and Claudia joined us and we had Thai food for the first time since Mom's been sick. Thai is always a mother-daughter favorite and we usually enjoy it when Dad can't join us for whatever reason. But tonight he happily ate swimming rama as the rest of us shared curry and pad thai. Mom has been working on feeding herself and today she ate both breakfast and dinner sitting up on the side of her bed, feeding herself. So much progress everyday.

Monday, May 2, 2011

5.2.11

AYNSLEY:
Mom has gotten so much stronger in the week and a half that I've been away. She balances standing up on her own and doesn't even think twice about it. She moves fluidly around her room to the bathroom with her walker, intuitively navigating the distances and turns. She did more PT today on her hands and knees, challenging her upper body and core. She says it's hard, which I know it is. But so good. I think the therapy should always be hard. She's always pushing to gain something that she lost-it's hard work. And so rewarding. Amazing to see that four months in bed hasn't diminished anything beyond repair.

I am so happy to be here this week. My last trip was such a whirlwind, this will be nice to be able to stay a little bit longer and settle in to a bit of a routine. Tomorrow night we're doing Thai food. Friday night a dear one of mine is in town. Wednesday, no chemo, but the CT scan. I'm anxiously awaiting those results, while Mom is just hoping the test will be easy.

Sunday, May 1, 2011

5.1.11

AYNSLEY:
May first. Glorious. Mom had lovely visitors, good spirits and good physical feelings. A field trip to the lake was planned in the afternoon.

I'll have much more to report tomorrow; I'm heading to Seattle in the morning.