AYNSLEY:
Tonight I celebrated Beltane in a circle with women. We all wore red and danced barefoot on rose petals. Seriously. Tonight is exactly between equinox, the time of earth balance, and summer solstice, the longest day of the year. It's the beginning of the light half of the year. The trees are blooming, the flowers are lush and vibrant, the soil is fragrant...May is my favorite month. I never had a way to explain it, but every year growing up, I could feel my spirits lift in May. I have more energy, more laughter, more literal lightness in my being. Every year is the same. I thrive in the light half of the year.
This ritual sharing has become so meaningful to me. Maybe because Mom's diagnosis came at winter solstice and her birthday at Imbolc, but I've come to view these magic days as times to take pause and reassess. Gary and I had originally set our wedding date as July 31st, in honor of Lammas, the time of year between summer solstice and autumnal equinox, the time of year for abundance. When we decided to move the wedding up, I knew I wanted it to be another magical time of year, so we got married as close to the vernal equinox as we could pull off.
And now here we are with another turning of the wheel. Honoring the time of year that celebrates love, rebirth and renewal. Perfect for settling into my marriage. Perfect for traveling to Seattle for Mother's Day. Perfect for recounting crazy hippie stories to Mom about my evening. She's tired of telling her same old story. She's tired of being sick. She wishes she could have one whole day of feeling well. Hearing me tell her that I'm scattering rose petals on my Brooklyn sidewalk in honor of May Day transports her, at least for a moment. She can marvel at what a weirdo kid she raised, she can imagine a yoga studio in the East Village full of ladies dancing and laughing, she can learn a little bit about pagan rituals. And she can know that I asked all of these powerful women for healing blessings, and that now her story has spread even farther, touched even more people and invoked even more prayer, in all it's forms.
Saturday, April 30, 2011
Friday, April 29, 2011
4.29.11
AYNSLEY:
Allow me to share something I was reading tonight that touched me. It comes from a nutrition book, of all things, by the fabulous Nina Planck. "The ideal stance is a kind of gentle wonder, now and again brimming over into radical amazement, as your story unfolds." What great musings on life. If we can adjust our stance, even occasionally, to assume the position of a wide eyed, open mined observer, we can change our very concept of the world.
In December, when I got the phone call from my sobbing father, I went into shock and told my boss that I needed to leave town right away, my mother was dying. All the evidence pointed to that unequivocal fact. I couldn't eat, I couldn't focus, I couldn't read more than a paragraph at a time (on a good day) for almost two months. And then I began to shift from All Action All The Time to simply watching things unfold. Not being able to control this situation or any outcome in it has been the best lesson of my life. I burnt out very quickly as "doer" and had to shift to observer. And what a gift. What I have been able to witness. I am now able to assume this stance, this gentle wonder. I can marvel at the power of determination, of grit and grace and feel that radical amazement. The overpowering gratitude. Boundless, pure love.
As I marvel at Mom's accomplishments today, she shrugs them off. She walked so far today, with the walker, distances I couldn't imagine two weeks ago. And she's telling me it's no big deal. I'm not sure if she's minimizing her progress because she's trying to be modest and feels silly about us making a fuss over walking down a hallway, something we all do so effortlessly, without giving it a thought. Or maybe she sees how far she still has to go before she can be independent and walk on her own. Or maybe the strength is just how she's feeling today and she takes it for granted that that's how far her body can take her today.
Ross made an excellent point tonight that the progress is significant in any case, but even more so because it's all happening during her chemo weeks. So she still has stomach cramps and nausea and digestive troubles, and still she walks farther. Still she pushes harder.
There are a lot of long distance friends planning to visit next month, which is lovely, but also concerning to Mom. She thinks everyone is coming because they want to see her before she dies. That this (random, I'm sure) timing is because she doesn't have much time. Four months ago, I would have agreed. But now I realize how wrong I was to tell my boss that my mother was dying. That is so not what she's doing right now. And now that I have been able to take the position of observer, I can see that. The story will always unfold, and will take unexpected twists and turns. We will all have our hearts broken with sorrow and broken open with joy. I hope I can always remember to take a step back, watch life as it happens, and treat myself and everyone around with gentleness.
Allow me to share something I was reading tonight that touched me. It comes from a nutrition book, of all things, by the fabulous Nina Planck. "The ideal stance is a kind of gentle wonder, now and again brimming over into radical amazement, as your story unfolds." What great musings on life. If we can adjust our stance, even occasionally, to assume the position of a wide eyed, open mined observer, we can change our very concept of the world.
In December, when I got the phone call from my sobbing father, I went into shock and told my boss that I needed to leave town right away, my mother was dying. All the evidence pointed to that unequivocal fact. I couldn't eat, I couldn't focus, I couldn't read more than a paragraph at a time (on a good day) for almost two months. And then I began to shift from All Action All The Time to simply watching things unfold. Not being able to control this situation or any outcome in it has been the best lesson of my life. I burnt out very quickly as "doer" and had to shift to observer. And what a gift. What I have been able to witness. I am now able to assume this stance, this gentle wonder. I can marvel at the power of determination, of grit and grace and feel that radical amazement. The overpowering gratitude. Boundless, pure love.
As I marvel at Mom's accomplishments today, she shrugs them off. She walked so far today, with the walker, distances I couldn't imagine two weeks ago. And she's telling me it's no big deal. I'm not sure if she's minimizing her progress because she's trying to be modest and feels silly about us making a fuss over walking down a hallway, something we all do so effortlessly, without giving it a thought. Or maybe she sees how far she still has to go before she can be independent and walk on her own. Or maybe the strength is just how she's feeling today and she takes it for granted that that's how far her body can take her today.
Ross made an excellent point tonight that the progress is significant in any case, but even more so because it's all happening during her chemo weeks. So she still has stomach cramps and nausea and digestive troubles, and still she walks farther. Still she pushes harder.
There are a lot of long distance friends planning to visit next month, which is lovely, but also concerning to Mom. She thinks everyone is coming because they want to see her before she dies. That this (random, I'm sure) timing is because she doesn't have much time. Four months ago, I would have agreed. But now I realize how wrong I was to tell my boss that my mother was dying. That is so not what she's doing right now. And now that I have been able to take the position of observer, I can see that. The story will always unfold, and will take unexpected twists and turns. We will all have our hearts broken with sorrow and broken open with joy. I hope I can always remember to take a step back, watch life as it happens, and treat myself and everyone around with gentleness.
Thursday, April 28, 2011
4.28.11
AYNSLEY:
Mom walked without her walker today! She had her gait belt around her waist, the physical therapist helped her maintain her balance, and out she went, down the hall. No walker. And she walked to the gym, which is a good distance, and then exercised. I can't begin to fathom the mechanisms of her gaining strength, especially as she struggles to eat and is continually losing weight. But she somehow does.
Mom is excited for the royal wedding tomorrow, which I find hilarious and totally authentic. She loved Princess Diana and watched that wedding 30 years ago, and now is excited to hear all about William. The only reason it's really on my radar at all is because Gary's work is all in a tizzy about it and he needs to be there at 6am tomorrow. But Mom is excited. It warms my heart, actually, and says a lot about her character: she's looking forward to a joyful event. It doesn't matter that she doesn't know the people involved, just knowing there will be a public celebration of love is enough to bring her joy. She absorbs the positivity that is all around, focuses on it, draws in towards her, then reflects it out. That's one of the reasons that so many people are still volunteering to spend time with her and traveling to visit her. She's just fun to be around.
Mom walked without her walker today! She had her gait belt around her waist, the physical therapist helped her maintain her balance, and out she went, down the hall. No walker. And she walked to the gym, which is a good distance, and then exercised. I can't begin to fathom the mechanisms of her gaining strength, especially as she struggles to eat and is continually losing weight. But she somehow does.
Mom is excited for the royal wedding tomorrow, which I find hilarious and totally authentic. She loved Princess Diana and watched that wedding 30 years ago, and now is excited to hear all about William. The only reason it's really on my radar at all is because Gary's work is all in a tizzy about it and he needs to be there at 6am tomorrow. But Mom is excited. It warms my heart, actually, and says a lot about her character: she's looking forward to a joyful event. It doesn't matter that she doesn't know the people involved, just knowing there will be a public celebration of love is enough to bring her joy. She absorbs the positivity that is all around, focuses on it, draws in towards her, then reflects it out. That's one of the reasons that so many people are still volunteering to spend time with her and traveling to visit her. She's just fun to be around.
Wednesday, April 27, 2011
4.27.11
AYNSLEY:
Chemo day two, round two. After feeling awful yesterday and not sleeping well last night, Mom rested throughout her chemo treatment and took such a deep, long nap this afternoon that when she woke up at 6pm, she thought it was 6am. She's feeling much better today and especially after that nap.
Tonight is Mom's BFF's birthday. The group of girlfriends are all celebrating in Mom's room tonight with dinner and sweets. I love this. There's such a commitment from everyone around my parents to bring joy to their lives. Instead of missing out on celebrations or gatherings, everyone is willing to bring them to her. Book Club, our wedding, birthday parties...it's a testament to how amazing the Kline is, too, that they have been so accommodating and helpful with everything. It's a testament to the community that my parents are a part of.
I suppose it's really a testament to life in general. There are celebration days. There are mourning days. And then there are most normal days, which blur the lines and have both happiness and grief intertwined and inseparable.
Chemo day two, round two. After feeling awful yesterday and not sleeping well last night, Mom rested throughout her chemo treatment and took such a deep, long nap this afternoon that when she woke up at 6pm, she thought it was 6am. She's feeling much better today and especially after that nap.
Tonight is Mom's BFF's birthday. The group of girlfriends are all celebrating in Mom's room tonight with dinner and sweets. I love this. There's such a commitment from everyone around my parents to bring joy to their lives. Instead of missing out on celebrations or gatherings, everyone is willing to bring them to her. Book Club, our wedding, birthday parties...it's a testament to how amazing the Kline is, too, that they have been so accommodating and helpful with everything. It's a testament to the community that my parents are a part of.
I suppose it's really a testament to life in general. There are celebration days. There are mourning days. And then there are most normal days, which blur the lines and have both happiness and grief intertwined and inseparable.
Tuesday, April 26, 2011
4.26.11
AYNSLEY:
Mom requested not to talk too much tonight, due to a bellyache. She described her stomach as full of gas, achy and queasy. But then she proceeded to chat for a good ten minutes, so she couldn't have been too far down the misery continuum.
Tomorrow is treatment 2 of chemo, only the systemic Taxol. That's the one that typically makes her the sickest, so I'm anticipating some rough days ahead.
Today Mom walked up and down the longest length of the hallway and spoke with a social worker about the possibility of going home in a month or so. We talked about it last week and she mentioned that she loved being out on the back deck at home in the morning sunshine and how she never made time for it. Now she is hoping for the opportunity to be able to do yoga at home in the summer sunlight. I think it's a distinct possibility.
Mom requested not to talk too much tonight, due to a bellyache. She described her stomach as full of gas, achy and queasy. But then she proceeded to chat for a good ten minutes, so she couldn't have been too far down the misery continuum.
Tomorrow is treatment 2 of chemo, only the systemic Taxol. That's the one that typically makes her the sickest, so I'm anticipating some rough days ahead.
Today Mom walked up and down the longest length of the hallway and spoke with a social worker about the possibility of going home in a month or so. We talked about it last week and she mentioned that she loved being out on the back deck at home in the morning sunshine and how she never made time for it. Now she is hoping for the opportunity to be able to do yoga at home in the summer sunlight. I think it's a distinct possibility.
Monday, April 25, 2011
4.25.11
AYNSLEY:
As Mom put it, she had an INSANE physical therapy session today. It sounded awesome: the therapist had Mom walk without a walker, just by having her (the therapist's) hands on Mom's waist for stability. Mom also was on the mat on all fours. Now, as exhausting as that position is, it must have felt so good to be oriented differently in space than on her back or sitting up. Face down! Supported on hands and knees! While there, she did some cat/cow stretches for her back real yoga! And then she stood on her knees and balanced like that with the therapist's support. Lots of different orientations, lots of different joints being used, different heights...all great things to practice.
Mom described herself as feeling pretty okay today; she had some stomach discomfort/queasiness in the morning, but said it got a bit better after lunch. She had that insane PT session in the afternoon, so she's obviously is still very strong.
I have a few voicemails saved on my phone from when my parents have called over the past few months. Mom always leaves the message and every few weeks, I listen again and resave, so I can keep the recording of her voice. This morning I was listening to them all again to resave and she sounds so different in each one. In each one, I can hear her getting stronger. In the first message, her voice sounds bright, but slurred and wavy; in the second, the voice is strong, but she's not 100% herself. In the last one, she sounds great. That last one is probably from a month ago. Today she sounds even better. She sounds like herself.
As Mom put it, she had an INSANE physical therapy session today. It sounded awesome: the therapist had Mom walk without a walker, just by having her (the therapist's) hands on Mom's waist for stability. Mom also was on the mat on all fours. Now, as exhausting as that position is, it must have felt so good to be oriented differently in space than on her back or sitting up. Face down! Supported on hands and knees! While there, she did some cat/cow stretches for her back real yoga! And then she stood on her knees and balanced like that with the therapist's support. Lots of different orientations, lots of different joints being used, different heights...all great things to practice.
Mom described herself as feeling pretty okay today; she had some stomach discomfort/queasiness in the morning, but said it got a bit better after lunch. She had that insane PT session in the afternoon, so she's obviously is still very strong.
I have a few voicemails saved on my phone from when my parents have called over the past few months. Mom always leaves the message and every few weeks, I listen again and resave, so I can keep the recording of her voice. This morning I was listening to them all again to resave and she sounds so different in each one. In each one, I can hear her getting stronger. In the first message, her voice sounds bright, but slurred and wavy; in the second, the voice is strong, but she's not 100% herself. In the last one, she sounds great. That last one is probably from a month ago. Today she sounds even better. She sounds like herself.
Sunday, April 24, 2011
4.24.11
AYNSLEY:
After four straight days of high energy and feeling really good, Mom slowed down a little bit today. She napped, felt queasy in bursts and ate moderate amounts of food. Up until this week, today would have been a really good day. After the past few days, we see a difference. I'm 99.9% certain that it's due to the chemo finally catching up with her, but it seems to be easing in, or creating gentler side effects. The weather in Seattle finally turned today, and both my parents enjoyed a little respite from the high energy sunshine, saying that it was a good day to stay in and relax.
Her voice still sounds clear and strong, and as I was on the phone tonight, two friends who she hadn't seen in a while came to visit, which made her super happy. She is pulling energy from all its sources: the sun, loving friends, positive thoughts sent her way, prayer.
With Easter and Passover nearly behind us, we are fast approaching Beltane, the celebration of rebirth. This is the time of year devoted to renewal, fertility, love and high spirits. The time of year when the sun comes out to stay, the frost leaves the ground for good and we are firmly rooted in the light half of the year. You all know this as May Day, which is one week away. While it seems too much to say it's a time of healing, it's definitely a time of hope.
After four straight days of high energy and feeling really good, Mom slowed down a little bit today. She napped, felt queasy in bursts and ate moderate amounts of food. Up until this week, today would have been a really good day. After the past few days, we see a difference. I'm 99.9% certain that it's due to the chemo finally catching up with her, but it seems to be easing in, or creating gentler side effects. The weather in Seattle finally turned today, and both my parents enjoyed a little respite from the high energy sunshine, saying that it was a good day to stay in and relax.
Her voice still sounds clear and strong, and as I was on the phone tonight, two friends who she hadn't seen in a while came to visit, which made her super happy. She is pulling energy from all its sources: the sun, loving friends, positive thoughts sent her way, prayer.
With Easter and Passover nearly behind us, we are fast approaching Beltane, the celebration of rebirth. This is the time of year devoted to renewal, fertility, love and high spirits. The time of year when the sun comes out to stay, the frost leaves the ground for good and we are firmly rooted in the light half of the year. You all know this as May Day, which is one week away. While it seems too much to say it's a time of healing, it's definitely a time of hope.
Saturday, April 23, 2011
Friday, April 22, 2011
4.22.11
AYNSLEY:
And the streak continues. I don't know why or how, but I don't know that I care. Mom had another great day. For the first time since her diagnosis, when I asked how she was, she said, "Good!" She ate very well today and as I hung up the phone, she was gearing up to have dinner sitting on the side of the bed.
Today was another beautiful, sunny day in Seattle and Mom spent about a half an hour in the sunshine. But instead of her regular spot in the courtyard behind her room, she went upstairs to practice getting in and out of the car! The wheelchair fit perfectly in the trunk and she practiced the transfer from the chair to the car a few times. Tomorrow is supposed to be another clear and sunny day and Mom's favorite bike ride is along Lake Washington, very close to the KGH. So, the hope is that tomorrow she can take a field trip. Not a bike ride, but at least maybe she can feel the breeze off the water, hear the ducks and smell all of the cherry blossoms in full bloom. It's a gorgeous spot.
To celebrate their anniversary, the amazing staff at KGH got Molly Moon ice cream and sparkling cider with wine glasses. Too cute. Mom also had a visit from the podiatrist, which was necessary and almost as good as a pedicure (okay, not really, but she's so sensitive to smells that nail polish is out of the question. We'll take what we can get).
I know that the chemo will kick in at some point and these glorious, happy days will take pause. But here's a toast to celebrating happy things, to momentum and to inertia. May these past few days build up a wall of resistance and may the fall be less steep and less intolerable. May we all keep chugging along, basking in the sun as long as it shines and hold these beautiful days close to our hearts, always.
And the streak continues. I don't know why or how, but I don't know that I care. Mom had another great day. For the first time since her diagnosis, when I asked how she was, she said, "Good!" She ate very well today and as I hung up the phone, she was gearing up to have dinner sitting on the side of the bed.
Today was another beautiful, sunny day in Seattle and Mom spent about a half an hour in the sunshine. But instead of her regular spot in the courtyard behind her room, she went upstairs to practice getting in and out of the car! The wheelchair fit perfectly in the trunk and she practiced the transfer from the chair to the car a few times. Tomorrow is supposed to be another clear and sunny day and Mom's favorite bike ride is along Lake Washington, very close to the KGH. So, the hope is that tomorrow she can take a field trip. Not a bike ride, but at least maybe she can feel the breeze off the water, hear the ducks and smell all of the cherry blossoms in full bloom. It's a gorgeous spot.
To celebrate their anniversary, the amazing staff at KGH got Molly Moon ice cream and sparkling cider with wine glasses. Too cute. Mom also had a visit from the podiatrist, which was necessary and almost as good as a pedicure (okay, not really, but she's so sensitive to smells that nail polish is out of the question. We'll take what we can get).
I know that the chemo will kick in at some point and these glorious, happy days will take pause. But here's a toast to celebrating happy things, to momentum and to inertia. May these past few days build up a wall of resistance and may the fall be less steep and less intolerable. May we all keep chugging along, basking in the sun as long as it shines and hold these beautiful days close to our hearts, always.
Thursday, April 21, 2011
4.21.11
AYNSLEY:
WOW. What a day. Mom was so energetic, strong, hungry and focused today, it was great. I spent last night with her and we had such a great night: we fell asleep around 10pm and woke up at 3:15, and then again at 7am. I'm kind of ashamed to admit it, but I slept more the past few nights being in Seattle than I've slept in a very long time. This wasn't supposed to be a vacation, but I definitely got a lot of rest. And, full embarrassing disclosure: Mom was actually awake before I was. At 7:15, she very softly whispered my name to see if I was awake, which I was, and then asked me to make a list of the things she'd been thinking of.
I am blessed to be the genetic recipient of many of my parents' gifts, but with those come the not so pleasant things, too and one of them is night anxiety. Mom deals with the racing thoughts by getting out of bed and writing all her thoughts down so she can go back to sleep. (I just lie awake, worrying). But now that she can't do that, when she's not super exhausted, her thoughts sometimes don't have an outlet. So today we made a list: 1) yard work needs to be done, no weed killer and please have the edges trimmed (I have no idea what that means) 2) she wants to get a regular exercise routine, which includes morning yoga and afternoon strength work (which we implemented today) 3) what should she give Dad as an anniversary present?
Clearly, not life or death stuff, but the stuff that's important and sometimes keeps us awake at night. We set to work outlining a morning exercise plan and did lots of stretches: hamstring lengthening, hip opening, lots of neck and shoulder stretches, torso twists and some heart opening poses. Then she wanted to get out of bed to stretch her calves. So we got the walker and she stood by the side of the bed, stretching her legs. Then she wanted to practice going from sitting to standing, which she did 10 times. Then she wanted to see if she could stand unassisted, which she did for 20 seconds! I haven't seen her that strong or energized in a long time, it was amazing. Then it was time for breakfast. She sat on the edge of the bed and fed herself an entire serving of cheerios and half a banana and drank an entire cup of tea with whole milk. About an hour later she was still hungry and ate some of Dad's leftover chicken chow mein (an entire cup full, not just a couple of bites) and a glass of orange juice. An hour after that she split a carrots, beets, kale, chard, parsley and spinach juice with me. YUM. In between all of the exercise and food, we had a wonderful conversation. It was just so nice and fun and like how we used to talk.
And then I flew home. I was concerned that maybe she had burnt herself out all morning and would be a little sick and tired in the afternoon. Not so. She walked all the way down the hall and outside into the courtyard and had physical therapy. She continued to "eat like a pig" as she told me (HOORAY!) and sounded still super alert and strong when I talked to her 9 hours after I left.
She's expecting a visit from some old (in length, not age) friends tomorrow and is very excited about that; I think the anticipation of seeing dear ones always brings out more strength. I am just marveling at her day today and hoping for many more like it.
But even if there aren't any more like that, spending this time with her, just the two of us, was really magical.
WOW. What a day. Mom was so energetic, strong, hungry and focused today, it was great. I spent last night with her and we had such a great night: we fell asleep around 10pm and woke up at 3:15, and then again at 7am. I'm kind of ashamed to admit it, but I slept more the past few nights being in Seattle than I've slept in a very long time. This wasn't supposed to be a vacation, but I definitely got a lot of rest. And, full embarrassing disclosure: Mom was actually awake before I was. At 7:15, she very softly whispered my name to see if I was awake, which I was, and then asked me to make a list of the things she'd been thinking of.
I am blessed to be the genetic recipient of many of my parents' gifts, but with those come the not so pleasant things, too and one of them is night anxiety. Mom deals with the racing thoughts by getting out of bed and writing all her thoughts down so she can go back to sleep. (I just lie awake, worrying). But now that she can't do that, when she's not super exhausted, her thoughts sometimes don't have an outlet. So today we made a list: 1) yard work needs to be done, no weed killer and please have the edges trimmed (I have no idea what that means) 2) she wants to get a regular exercise routine, which includes morning yoga and afternoon strength work (which we implemented today) 3) what should she give Dad as an anniversary present?
Clearly, not life or death stuff, but the stuff that's important and sometimes keeps us awake at night. We set to work outlining a morning exercise plan and did lots of stretches: hamstring lengthening, hip opening, lots of neck and shoulder stretches, torso twists and some heart opening poses. Then she wanted to get out of bed to stretch her calves. So we got the walker and she stood by the side of the bed, stretching her legs. Then she wanted to practice going from sitting to standing, which she did 10 times. Then she wanted to see if she could stand unassisted, which she did for 20 seconds! I haven't seen her that strong or energized in a long time, it was amazing. Then it was time for breakfast. She sat on the edge of the bed and fed herself an entire serving of cheerios and half a banana and drank an entire cup of tea with whole milk. About an hour later she was still hungry and ate some of Dad's leftover chicken chow mein (an entire cup full, not just a couple of bites) and a glass of orange juice. An hour after that she split a carrots, beets, kale, chard, parsley and spinach juice with me. YUM. In between all of the exercise and food, we had a wonderful conversation. It was just so nice and fun and like how we used to talk.
And then I flew home. I was concerned that maybe she had burnt herself out all morning and would be a little sick and tired in the afternoon. Not so. She walked all the way down the hall and outside into the courtyard and had physical therapy. She continued to "eat like a pig" as she told me (HOORAY!) and sounded still super alert and strong when I talked to her 9 hours after I left.
She's expecting a visit from some old (in length, not age) friends tomorrow and is very excited about that; I think the anticipation of seeing dear ones always brings out more strength. I am just marveling at her day today and hoping for many more like it.
But even if there aren't any more like that, spending this time with her, just the two of us, was really magical.
Wednesday, April 20, 2011
4.20.11
AYNSLEY:
What a glorious Seattle day! I passed a gorgeous view of Seattle with snow capped mountains and cheery trees in full, fragrant bloom on my morning run. Spring is officially here, and seeing the blossoms and green things is inspiring; knowing that all of these beautiful delicate little life forces fought to break through frozen ground to sprout and flourish. As I was running, I was going through stories I'll tell in the future in my head: the year that Mom was sick, and how she stunned all of the doctors by thriving when they doubted her surviving. The little fantasies that keep me going.
During Mom's dinner tonight, it was just Dad, Ross and me and Mom seemingly out of the blue asked if we wanted to talk about funeral arrangements. Without missing a beat, Ross said, "no." I played the active listener and answered by asking another question: did she want to talk about it. Um, yeah, of course she did. She wouldn't have brought it up if she didn't want to discuss with the four of us there.
Needless to say, it was a weird day. My morning was all about springtime and light in my head and then we come crashing back to reality and what's been worrying Mom.
Mom started her second round of chemo today. As usual, her appetite was awesome beforehand and she ate 3/4 of a ham sandwich. We picked up Chinese food for lunch and she enjoyed that, too. So far, she's feeling fine after chemo and I'm hoping for a good night tonight: it's girl's night again. We're only doing the intrathecal every 3 weeks, which we did today. Next week she'll get Taxol and a IV bone boosting drug. The week after that, no chemo, and we'll do another CT scan. I'm very interested to see the results of that: we haven't had one in almost two months.
Right now my parents are spooning on Mom's hospital bed, watching/listening to American Idol. Seriously, how cute are they? This Friday is their 32nd wedding anniversary.
Tuesday, April 19, 2011
4.19.11
AYNSLEY:
Last night was the first girls only slumber party in almost a month. It was great: we both fell asleep at 9pm (in fairness, I woke up at 5am EST to fly here and was still mostly in that timezone), woke up at midnight for a bathroom break, then fell back to sleep immediately until 4am for another bathroom break. I got up for good at 7am and Mom slept another hour after that. I have a difficult time falling asleep under normal conditions, and usually if I'm up in the middle of the night, it takes about 30 minutes each time to get back to sleep. If Mom's having a rough night and is up every two hours, this is challenging. But last night, at 4:15am, laying on the floor, listening to the whirring of her IV and the ticking of the clock, I felt so good to be somewhere that I belonged. Not that I don't belong at home in bed with my husband in Brooklyn, but I belonged there in that moment and I wouldn't have traded it for anything.
Last night was the first girls only slumber party in almost a month. It was great: we both fell asleep at 9pm (in fairness, I woke up at 5am EST to fly here and was still mostly in that timezone), woke up at midnight for a bathroom break, then fell back to sleep immediately until 4am for another bathroom break. I got up for good at 7am and Mom slept another hour after that. I have a difficult time falling asleep under normal conditions, and usually if I'm up in the middle of the night, it takes about 30 minutes each time to get back to sleep. If Mom's having a rough night and is up every two hours, this is challenging. But last night, at 4:15am, laying on the floor, listening to the whirring of her IV and the ticking of the clock, I felt so good to be somewhere that I belonged. Not that I don't belong at home in bed with my husband in Brooklyn, but I belonged there in that moment and I wouldn't have traded it for anything.
The day started off overcast and cold, but the sun broke out this afternoon and we ventured out to the courtyard again for some sun. We sat in the sunny spot for half an hour! Sitting up is hard work for Mom, but she happily did it, feeling the sun on her face (as you can see from the picture-she's really basking in it!)
Mom's had a good appetite the past few days, but today the food that was provided wasn't appetizing to her. She ate an entire serving of cheerios and half a banana for breakfast-which she fed herself, sitting upright on the side of the bed!!- but lunch and dinner were a few bites only. She's also lost 3 pounds since last week, bringing her to 89 pounds. Mom gets weighed each week in the shower, and today was shower day. I love being in town and present for that, too-I think that bathing is a fundamentally healing thing and I love being in the room, helping to keep Mom warm, soaping her up and powdering her after she's clean.I'm just now rereading today's events and realizing what a strenuous day Mom had: sitting up for breakfast, feeding herself cold cereal, shower, outdoor excursion...and that's all before 3pm.
At 3:30 this afternoon, a social worker from an agency for the blind and visually impaired came over to meet with us. He was great and told us about lots of amazing (free) resources that are available. There are many computer programs that are adapted for the visually impaired, allowing people to go back to work if they've lost their sight. There is also a fascinating mail library that works sort of like Netflix for audio books: they mail us one, we keep it for as long as we want, then mail it back and they send another. The books look sort of like the old school Nintendo games and plug into a digital reader that was designed by blind people-all of the buttons talk to you and are different shapes and sizes. It was very cool, but sort of unnecessary for Mom since she has audible.com and listens to books on her iPhone. But this could be something that she could do on her own in the future: there's no way she can navigate through the iPhone by herself. The social worker then asked if Mom had any questions for him and she really wanted to know about watching movies. So, apparently, there are some films that have some descriptive narration for people who are visually impaired. And, 5th Ave Theatre offers some of it's matinee performances with it as well, so people can "see" the scenes and understand unspoken situations. I don't know that Mom will ever be able to take advantage of any of these resources, but it was very cool to learn about how many are out there.
The best thing about the social worker's information packet was a large packet just for the spouse/partner of someone who has lost their sight. I didn't read it, but I LOVED that it was included. In all of this, Dad gets lost. Mom alluded to this way back in December when she said it's easy to be the patient, and in a small way, she's right. She doesn't have any responsibilities right now except trying to fight cancer. Dad is still working, trying to manage the house, the bills, feeding himself, sleeping, schelping me to the airport every two weeks, advocating for Mom, feeding Mom, helping Mom to the bathroom, giving her all her pills, emailing with the doctors...it was so nice that this organization made him a packet. I wish every oncology department we have been in had a packet for the spouse.
Mom also met with her occupational therapist today-they didn't have a session, but they talked about Mom's goals and how she could help. We all decided that Mom's remaining benefit sessions are best spent in physical therapy; OT has helped immensely in getting Mom walking to the bathroom with her walker and washing her hands, but she's sort of hit the wall as far as how much more she can do. The OT gave us lots of balance work suggestions, and I stupidly mentioned that she could sit up on the edge of the bed and close her eyes. (This is what I do with my clients all the time-whenever they've mastered a balance level, I ask them to do it with their eyes closed). Mom sort of laughed at me and reminded me that she basically always has her eyes closed. It was interesting to me: just like that, I forgot she was blind.
Tomorrow is supposed to be the beginning of Chemo: Round Two. We haven't heard otherwise, but wouldn't be surprised if they cancel it last minute due to the infection. Mom still has a low grade fever that we've been keeping in check with Tylenol, but I'm not sure how sick is too sick to undergo chemo.
Monday, April 18, 2011
4.18.11
AYNSLEY:
Please forgive the brief update tonight; I am tired. Mom does have an infection: c. def, which I haven't looked into at all, but was explained to us as an overgrowth of bacteria due to her previous round of antibiotics killing off the healthy flora in her belly. She seems to be pretty comfortable despite it and we're still planning to start round 2 of chemo on Wednesday.
Today was beautiful in the afternoon and we went outside for some sunshine. She really felt the warmth and the sun on her face. Mom joked that I should bring her bikini and a lounge chair from home and lay out in the yard. Maybe.
Other than that, things are about status quo. It's so nice to be here and be able to focus on only my family and being present for my mom instead of dealing with wedding stuff. We had such a nice day today.
Sunday, April 17, 2011
4.17.11
AYNSLEY:
It is an infection. I'm not sure what kind, where it started and how difficult it will be to treat. We're not sure how it will affect chemotherapy, which is scheduled to start again on Wednesday. I think we're planning to begin antibiotics tomorrow, but again, I'm not sure. I should be able to have more detailed information from the trenches, so to speak, and hope to be able to provide everyone with more specific details tomorrow and throughout the week.
I am hoping to arrive tomorrow morning. My flight was oversold, so I canceled my original booking and re-booked a first class ticket (there goes the tax refund) in hopes that would guarantee me a spot. Fingers crossed.
By all accounts, today was a good day. Mom ate well and was in good spirits. Gary noticed that weekends tend to be better than week days and he hypothesized that Mom really gets energy from her visitors. She has visitors on weekdays, too, but definitely more people swing by on weekends and it's spaced throughout the day. Or maybe weekends are just a more relaxed pace and she senses that in her environment. In any case, I'm so glad that this weekend was good for her and she felt strong, energetic and hungry.
In honor of things Mom and I love to share, I have a treat: Mom has been in book clubs on and off and quite a few years ago, she read Tender At The Bone, Ruth Reichl's first memoir. She enjoyed it thoroughly and recommended it to me; WOW. Ruth Reichl is amazing and her books are easily in my top 10 all time favorites. Her memoirs are divided into chapters and each one ends with a recipe. SO, to celebrate Passover beginning tomorrow, here is
Ruth Reichl's recipe for Matzo Brie.
From Garlic & Sapphires (which is awesome!)
2 matzos
2 eggs
salt
3 tablespoons unsalted butter
Set a colander inside a bowl (to catch the crumbs) and break the matzos into little pieces, dropping them into the colander. Remove the colander from the bowl and hold it beneath running water until the matzos are damp. Allow them to drain; then put the damp matzos into a bowl. Break the eggs into the bowl and stir with a fork until just mixed. Add salt to taste. Melt the butter in a small skillet over medium heat. When the foam subsides, add the matzo-egg mixture and cook, stirring constantly, for about 4 minutes, or until the egg is cooked and there are a few crispy little bits. Put on a plate and serve at once.
Serves 2
Enjoy!
Enjoying is the most important part. That's a lot of butter-relish it and chew well!
It is an infection. I'm not sure what kind, where it started and how difficult it will be to treat. We're not sure how it will affect chemotherapy, which is scheduled to start again on Wednesday. I think we're planning to begin antibiotics tomorrow, but again, I'm not sure. I should be able to have more detailed information from the trenches, so to speak, and hope to be able to provide everyone with more specific details tomorrow and throughout the week.
I am hoping to arrive tomorrow morning. My flight was oversold, so I canceled my original booking and re-booked a first class ticket (there goes the tax refund) in hopes that would guarantee me a spot. Fingers crossed.
By all accounts, today was a good day. Mom ate well and was in good spirits. Gary noticed that weekends tend to be better than week days and he hypothesized that Mom really gets energy from her visitors. She has visitors on weekdays, too, but definitely more people swing by on weekends and it's spaced throughout the day. Or maybe weekends are just a more relaxed pace and she senses that in her environment. In any case, I'm so glad that this weekend was good for her and she felt strong, energetic and hungry.
In honor of things Mom and I love to share, I have a treat: Mom has been in book clubs on and off and quite a few years ago, she read Tender At The Bone, Ruth Reichl's first memoir. She enjoyed it thoroughly and recommended it to me; WOW. Ruth Reichl is amazing and her books are easily in my top 10 all time favorites. Her memoirs are divided into chapters and each one ends with a recipe. SO, to celebrate Passover beginning tomorrow, here is
Ruth Reichl's recipe for Matzo Brie.
From Garlic & Sapphires (which is awesome!)
2 matzos
2 eggs
salt
3 tablespoons unsalted butter
Set a colander inside a bowl (to catch the crumbs) and break the matzos into little pieces, dropping them into the colander. Remove the colander from the bowl and hold it beneath running water until the matzos are damp. Allow them to drain; then put the damp matzos into a bowl. Break the eggs into the bowl and stir with a fork until just mixed. Add salt to taste. Melt the butter in a small skillet over medium heat. When the foam subsides, add the matzo-egg mixture and cook, stirring constantly, for about 4 minutes, or until the egg is cooked and there are a few crispy little bits. Put on a plate and serve at once.
Serves 2
Enjoy!
Enjoying is the most important part. That's a lot of butter-relish it and chew well!
Saturday, April 16, 2011
4.16.11
AYNSLEY:
She's having trouble staying on her train of thought. Or her train of communication. I can't tell which it is. She has very clear long term memory-ask her who's wedding she attended in 1983 and she'll tell you all the people who were there, everyone's name and relationship and what the drama surrounding the situation was. Ask her about her elementary school classmates, her college dorm room, my preschool teacher, 1972, 2008 etc and she knows it. Her short term memory is also excellent. She remembers what I'm doing from day to day, what Gary's doing day to day and where all of her friends are at any given time. But when she tries to talk about it, the sentences trail off and she can't follow it. I don't know if she's losing the words or the concept. But it's scary.
Maybe it's the result of extreme fatigue. Maybe it's medication. Maybe it's cancer around her brain. In her brain. Maybe it's starvation. I don't know. I hate not knowing.
A lovely woman who's been taking my aerobics classes for almost 6 years asked about the wedding this past Wednesday. She's very sweet and we have a friendly relationship: I ask about her granddaughters (sometimes she brings pictures) and her health and she asks about my love life and family. So when she heard I got married, she was asking all about the wedding. I have a canned answer when anyone peripheral asks about it and launched into that, complete with smiles and nods and what I hope is a dreamy newlywed blissful look. It works most of the time. But she was asking questions, which I sort of dodged until she asked "Did your mother cry?" I dropped the BS and told her the deal. She gave me the "I'm so sorry" spiel, and then nodded, patted me on the shoulder and said "Well, as long as she's comfortable." Excuse me? Now, I'm not angry with this very well meaning woman who has always been kind to me. But I'm angry as hell that this is what I should be hoping for.
Four months ago, it was inconceivable in my mind that my mother would not be present for the births of my sometime in the distant future arriving children. Like, actually present in my living room with the midwife, doula and acupuncturist(s). My child care plan has always been "convince my parents to move to NY." Throughout my adult life, I have been way more concerned about my dad's health. (The only green vegetable he eats is lettuce). I told Gary flat out when we first started dating that I might need to move to Seattle in 20 years to help clean out my parent's house when they finally downsized to a smaller condo or apartment and help care for the trauma that would cause my dad. In 20 years. And now the thing that's supposed to comfort me is that Mom is comfortable? NO. I want her vision back. I want her strength back. I want her to be able to go to yoga, to walk outside by herself and feel and see the sunshine. I want her to carry on a conversation about her opinions about things, whether it's her medical care, my life or politics. I want her to be able to think about going home and not be terrified that she'll get another fever, have another bizarre face numbing episode or fall.
I want I want I want.
And I know this is the root of unhappiness. I know that wanting so many things isn't healthy, that I need to allow the universe its course and accept what gifts it bestows.
So I keep trying. I keep encouraging the encouragable and minimizing the negatives. I get super excited about small things like eating half of a bowl of oatmeal and savor all of the moments that I get to have my hands on my mom. But at night, alone, I often silently rage against the things she doesn't have. I beg anyone who will listen to at least give her her vision back. Please, just this one thing. She wants it so badly.
But no one is listening and the world has bigger problems. My energy is better spent elsewhere.
So many people have sent me so much love and light this past week; I need to remember to take the time out and accept those gifts. And honestly, that's really the only thing that can transform anything for any of us anyway. Love and light, and, yes, comfort. Beautiful to give and beautiful to receive. So now I offer back up to the universe what I should have told that sweet woman on Wednesday: thanks.
She's having trouble staying on her train of thought. Or her train of communication. I can't tell which it is. She has very clear long term memory-ask her who's wedding she attended in 1983 and she'll tell you all the people who were there, everyone's name and relationship and what the drama surrounding the situation was. Ask her about her elementary school classmates, her college dorm room, my preschool teacher, 1972, 2008 etc and she knows it. Her short term memory is also excellent. She remembers what I'm doing from day to day, what Gary's doing day to day and where all of her friends are at any given time. But when she tries to talk about it, the sentences trail off and she can't follow it. I don't know if she's losing the words or the concept. But it's scary.
Maybe it's the result of extreme fatigue. Maybe it's medication. Maybe it's cancer around her brain. In her brain. Maybe it's starvation. I don't know. I hate not knowing.
A lovely woman who's been taking my aerobics classes for almost 6 years asked about the wedding this past Wednesday. She's very sweet and we have a friendly relationship: I ask about her granddaughters (sometimes she brings pictures) and her health and she asks about my love life and family. So when she heard I got married, she was asking all about the wedding. I have a canned answer when anyone peripheral asks about it and launched into that, complete with smiles and nods and what I hope is a dreamy newlywed blissful look. It works most of the time. But she was asking questions, which I sort of dodged until she asked "Did your mother cry?" I dropped the BS and told her the deal. She gave me the "I'm so sorry" spiel, and then nodded, patted me on the shoulder and said "Well, as long as she's comfortable." Excuse me? Now, I'm not angry with this very well meaning woman who has always been kind to me. But I'm angry as hell that this is what I should be hoping for.
Four months ago, it was inconceivable in my mind that my mother would not be present for the births of my sometime in the distant future arriving children. Like, actually present in my living room with the midwife, doula and acupuncturist(s). My child care plan has always been "convince my parents to move to NY." Throughout my adult life, I have been way more concerned about my dad's health. (The only green vegetable he eats is lettuce). I told Gary flat out when we first started dating that I might need to move to Seattle in 20 years to help clean out my parent's house when they finally downsized to a smaller condo or apartment and help care for the trauma that would cause my dad. In 20 years. And now the thing that's supposed to comfort me is that Mom is comfortable? NO. I want her vision back. I want her strength back. I want her to be able to go to yoga, to walk outside by herself and feel and see the sunshine. I want her to carry on a conversation about her opinions about things, whether it's her medical care, my life or politics. I want her to be able to think about going home and not be terrified that she'll get another fever, have another bizarre face numbing episode or fall.
I want I want I want.
And I know this is the root of unhappiness. I know that wanting so many things isn't healthy, that I need to allow the universe its course and accept what gifts it bestows.
So I keep trying. I keep encouraging the encouragable and minimizing the negatives. I get super excited about small things like eating half of a bowl of oatmeal and savor all of the moments that I get to have my hands on my mom. But at night, alone, I often silently rage against the things she doesn't have. I beg anyone who will listen to at least give her her vision back. Please, just this one thing. She wants it so badly.
But no one is listening and the world has bigger problems. My energy is better spent elsewhere.
So many people have sent me so much love and light this past week; I need to remember to take the time out and accept those gifts. And honestly, that's really the only thing that can transform anything for any of us anyway. Love and light, and, yes, comfort. Beautiful to give and beautiful to receive. So now I offer back up to the universe what I should have told that sweet woman on Wednesday: thanks.
Friday, April 15, 2011
4.15.11
AYNSLEY:
The dear one hanging out with Mom today emailed mid-shift to brag how great Mom was doing. She ate an excellent breakfast and almost 3/4 of her lunch. She was also alert and feeling better than she has in a long time. That was such a nice email to get.
The rest of the day was okay: Mom slept a lot. And she was waiting for her morphine dose to quell the aches of the fever. Her fever has been down for the past couple of days, but seems to be coming back a little bit. The infection jury is still out; apparently the sample cultures need to grow for 120 hours to give the full picture. The preliminary results aren't showing anything. I don't know what to think about that. Of course, no infection would be a good thing. But then what could be causing the fever? In any case, she was feeling a little feverish and really sleepy tonight.
The really good news is that Bossypants is Mom's Book Club book this month. Of course, Gary bought it as soon as it came out and was planning to lend it to me for my trip anyway, but this is even better! We love Tina Fey! I love discussing books with Mom, though we usually talk novels. But a hilarious memoir, highlighting women and gender roles, will be awesome.
The dear one hanging out with Mom today emailed mid-shift to brag how great Mom was doing. She ate an excellent breakfast and almost 3/4 of her lunch. She was also alert and feeling better than she has in a long time. That was such a nice email to get.
The rest of the day was okay: Mom slept a lot. And she was waiting for her morphine dose to quell the aches of the fever. Her fever has been down for the past couple of days, but seems to be coming back a little bit. The infection jury is still out; apparently the sample cultures need to grow for 120 hours to give the full picture. The preliminary results aren't showing anything. I don't know what to think about that. Of course, no infection would be a good thing. But then what could be causing the fever? In any case, she was feeling a little feverish and really sleepy tonight.
The really good news is that Bossypants is Mom's Book Club book this month. Of course, Gary bought it as soon as it came out and was planning to lend it to me for my trip anyway, but this is even better! We love Tina Fey! I love discussing books with Mom, though we usually talk novels. But a hilarious memoir, highlighting women and gender roles, will be awesome.
Thursday, April 14, 2011
4.14.11
AYNSLEY:
Clearly, I am not a reliable reporter. I apologize! In my defense, it's hard to know what's going on from across the country. So, I'm heading back to Seattle very early Monday morning to spend Passover with my family. I hope to be able to deliver much more accurate information next week!
So far Mom's pathology reports are looking negative. As in, no discernible infections right now. But we haven't gotten official word either way. Today, Mom has been really tired and sleeping a lot. But she enjoyed some corned beef sandwich for lunch between naps. And she said that she felt so much better than yesterday. The fever is gone, or almost gone-thanks to Tylenol (and maybe some other mysterious workings that I don't understand). So, we plug along from this point. And hope for the best.
Clearly, I am not a reliable reporter. I apologize! In my defense, it's hard to know what's going on from across the country. So, I'm heading back to Seattle very early Monday morning to spend Passover with my family. I hope to be able to deliver much more accurate information next week!
So far Mom's pathology reports are looking negative. As in, no discernible infections right now. But we haven't gotten official word either way. Today, Mom has been really tired and sleeping a lot. But she enjoyed some corned beef sandwich for lunch between naps. And she said that she felt so much better than yesterday. The fever is gone, or almost gone-thanks to Tylenol (and maybe some other mysterious workings that I don't understand). So, we plug along from this point. And hope for the best.
Wednesday, April 13, 2011
clarification
ROSS:
I just want to clarify that it is not certain that mom has an infection. All the preliminary test results do not show signs of an infection. Although it is not certain that she does not have an infection either, as of now, there is no proof of one. 5 minutes ago, mom's temperature was back down to 98.5 which is a good sign. We're hoping this is just a cold or something. We'll keep you posted... literally.
4.13.11
AYNSLEY:
Dammit. Three steps back. Mom has another infection. Again with the violent shivering. Again with the extreme fatigue. Again with the discomfort, the aches, the fever, the fear. They drew blood to run tests to see if they can find the source. She may go back to the hospital, but now she'll stable. Uncomfortable and tired, but stable.
The shivering is so scary. She gets so cold. Heartbreaking.
Everything about her today is heartbreaking. She was too sick to really talk to me, so she just whispered "I love you. I hope tomorrow is better."
Excuse me while I get furious.
I noticed in my post yesterday that I said Mom was craving peanuts from Citi Field. Of course, that was a typo, I meant Safeco. But instead of editing it, which is my usual morning-after typo fix, I thought about it. It's an interesting mistake for me to make. First, I don't really pay much attention to baseball anyway, so that fact that I know two stadium names at all is pretty impressive. But it also highlights the surreal world I have been inhabiting. The two places at once, two homes, not quite belonging to either place because I can't wholeheartedly commit to either one of them. It makes sense in a way, that I can't tell the difference between Citi Field and Safeco Field, that they are interchangeable in my mind. I don't really know where I am anymore.
Dammit. Three steps back. Mom has another infection. Again with the violent shivering. Again with the extreme fatigue. Again with the discomfort, the aches, the fever, the fear. They drew blood to run tests to see if they can find the source. She may go back to the hospital, but now she'll stable. Uncomfortable and tired, but stable.
The shivering is so scary. She gets so cold. Heartbreaking.
Everything about her today is heartbreaking. She was too sick to really talk to me, so she just whispered "I love you. I hope tomorrow is better."
Excuse me while I get furious.
I noticed in my post yesterday that I said Mom was craving peanuts from Citi Field. Of course, that was a typo, I meant Safeco. But instead of editing it, which is my usual morning-after typo fix, I thought about it. It's an interesting mistake for me to make. First, I don't really pay much attention to baseball anyway, so that fact that I know two stadium names at all is pretty impressive. But it also highlights the surreal world I have been inhabiting. The two places at once, two homes, not quite belonging to either place because I can't wholeheartedly commit to either one of them. It makes sense in a way, that I can't tell the difference between Citi Field and Safeco Field, that they are interchangeable in my mind. I don't really know where I am anymore.
Tuesday, April 12, 2011
4.12.11
AYNSLEY:
Occasionally I'll get feedback when I go off on hippie tangents about energy exchange and seasons of the year. People will tell me that they're so happy to be exposed to these other philosophies and isn't that an interesting perspective. So allow me another digression, this time into karma. I took a little too much delight in poking fun at Seattle yesterday. Today in NY, it dropped ten degrees and poured every time I stepped outside. By 10pm, fed up with sharing an umbrella with Gary and shivering on our walk home, I stomped my feet and shouted "enough of this crap!" To which Gary pointed out that I should be used to it, having grown up in Seattle. I was about to start pouting when I remembered my post from yesterday. And that's my version of karma. It rained on everyone in NY today-surely not every single New Yorker needed to learn a lesson from it. But I was due, and was karmically taught.
It was gorgeous in Seattle today.
Last night Mom enjoyed her book club for about 20 minutes before feeling really nauseous and heading back to her room. She vomited all her pills and spent a rough and uncomfortable night. But today was better. She was able to get most of her morning pills down and walked a bit with the help of the physical therapy aide. She had a bath that felt really good. She sounded upbeat and strong on the phone, looking forward to a special snack of roasted peanuts from Citi Field (her latest craving).
Dad has been administering the IV for the past few nights. He does such a good job that the next day, the morning nurse can't unscrew the tubes when her shift begins. So they dance a little: he hasn't volunteered that he's the one tightening them and she hasn't asked. I can't wait to see that in person; by now they have a little schtick and are so funny together. We were also told that KGH will be able to bill our insurance for medications and we won't have to pay anything more than the copay. Dad told the administrator that he'll take her word for it, but that if she's wrong, he's expecting her to pay the difference. I'm not sure how she responded to that, but it's a moot point. If we need to pay, him telling insurance that he got the wrong information won't mean jack. Still, I was proud of him for standing up.
Occasionally I'll get feedback when I go off on hippie tangents about energy exchange and seasons of the year. People will tell me that they're so happy to be exposed to these other philosophies and isn't that an interesting perspective. So allow me another digression, this time into karma. I took a little too much delight in poking fun at Seattle yesterday. Today in NY, it dropped ten degrees and poured every time I stepped outside. By 10pm, fed up with sharing an umbrella with Gary and shivering on our walk home, I stomped my feet and shouted "enough of this crap!" To which Gary pointed out that I should be used to it, having grown up in Seattle. I was about to start pouting when I remembered my post from yesterday. And that's my version of karma. It rained on everyone in NY today-surely not every single New Yorker needed to learn a lesson from it. But I was due, and was karmically taught.
It was gorgeous in Seattle today.
Last night Mom enjoyed her book club for about 20 minutes before feeling really nauseous and heading back to her room. She vomited all her pills and spent a rough and uncomfortable night. But today was better. She was able to get most of her morning pills down and walked a bit with the help of the physical therapy aide. She had a bath that felt really good. She sounded upbeat and strong on the phone, looking forward to a special snack of roasted peanuts from Citi Field (her latest craving).
Dad has been administering the IV for the past few nights. He does such a good job that the next day, the morning nurse can't unscrew the tubes when her shift begins. So they dance a little: he hasn't volunteered that he's the one tightening them and she hasn't asked. I can't wait to see that in person; by now they have a little schtick and are so funny together. We were also told that KGH will be able to bill our insurance for medications and we won't have to pay anything more than the copay. Dad told the administrator that he'll take her word for it, but that if she's wrong, he's expecting her to pay the difference. I'm not sure how she responded to that, but it's a moot point. If we need to pay, him telling insurance that he got the wrong information won't mean jack. Still, I was proud of him for standing up.
Monday, April 11, 2011
4.11.11
AYNSLEY:
I'm told that today was the first day in Seattle with sunshine. Mom's BFF, who is constantly looking out for her, pushing her to work a little harder and diversifying her routine, took Mom outside for a little vitamin D. Mom's vision is still fluctuating between non-existent and occasional shadows, but she could sure feel the sun on her face. If you've never lived in Seattle or London, you may not believe this, but sunshine absolutely has healing properties. Take it out of your life for months on end and you will be lethargic, achy and depressed. You will feel that it is not only reasonable to drink multiple servings of 16 ounces of espresso, milk and 54 grams of sugar, but necessary to survival. You will not bother to ever get dressed up for anything, because you are just going to get damp and muddy. You will listen to Nirvana. On repeat. So, the fact that Mom got some sun on her face that she could feel and enjoy was wonderful. It gave her energy through out the day.
She had a bit of an appetite early in the day-both breakfast and lunch managed to go down and stay down. She passed on dinner, citing a low level of queasiness, but all that really means is that she doesn't have an appetite. She wasn't dizzy or exhausted or vomiting..I kind of tend to go with "who cares" if she misses one meal but feels okay otherwise.
When I called to check in tonight, Mom was on her way to Book Club. Since January, her club has met wherever Mom is. They pick books that are short and available on audible.com, which Mom can access on her iPhone. Last month it was short stories, this month poetry. The amazing amazing M, who works at KGH and is good friends of good friends of ours, arranges cookies and meeting spaces. The kindness of these women, to rearrange their books and meetings around Mom, is astounding and lovely. I don't know if they know how much it means to her. She sounded so normal tonight, talking about it. It could have been any one of those Book Club Mondays when Mom rushes me off the phone so she can get to the meeting. This is a remnant of her past life that she loves and doesn't have to give up. She has access to the books and the conversation. For those two hours, she isn't "the patient." She's simply a friend and conversation contributor. From the bottom of my heart, I want to give these women all my gratitude. They're the sunshine in another form. Thank you so much.
She had a bit of an appetite early in the day-both breakfast and lunch managed to go down and stay down. She passed on dinner, citing a low level of queasiness, but all that really means is that she doesn't have an appetite. She wasn't dizzy or exhausted or vomiting..I kind of tend to go with "who cares" if she misses one meal but feels okay otherwise.
When I called to check in tonight, Mom was on her way to Book Club. Since January, her club has met wherever Mom is. They pick books that are short and available on audible.com, which Mom can access on her iPhone. Last month it was short stories, this month poetry. The amazing amazing M, who works at KGH and is good friends of good friends of ours, arranges cookies and meeting spaces. The kindness of these women, to rearrange their books and meetings around Mom, is astounding and lovely. I don't know if they know how much it means to her. She sounded so normal tonight, talking about it. It could have been any one of those Book Club Mondays when Mom rushes me off the phone so she can get to the meeting. This is a remnant of her past life that she loves and doesn't have to give up. She has access to the books and the conversation. For those two hours, she isn't "the patient." She's simply a friend and conversation contributor. From the bottom of my heart, I want to give these women all my gratitude. They're the sunshine in another form. Thank you so much.
Sunday, April 10, 2011
4.10.11
ROSS
Well, dad administered mom's IV tonight and everything went smoothly. Our favorite charge nurse very patiently walked him through the process and let dad do everything. He did a fine job and the IV is running well. Mom had a good day today, we had a good flow of young visitors averaging about 20 years younger than the mean age of our visitors. A couple my age, and a couple of my youngest first cousins. Alinea and Kaden really livened up the day for mom. Mom slept between her visits and ate a good lunch. She didn't like her dinner and felt a bit queasy in the evening. As of present, mom is feeling ok and is looking forward to getting a good rest tonight.
Saturday, April 9, 2011
4.9.11
AYNSLEY: Today was much better than yesterday. Leaps and bounds better. Mom was laughing today, eating more, entertaining visitors and much more engaged with everything. Dad got his first IV administering lesson tonight, from my favorite nurse. Tomorrow he's going to try to give Mom her medication through the IV (with supervision, of course). Maybe Ross will write that blog-hilarity is sure to ensue.
Friday, April 8, 2011
4.8.11
AYNSLEY:
Chemotherapy is taking its toll. While yesterday morning was decent, the afternoon deteriorated and today was just bad all day. Mom was nauseous, vomiting and extremely fatigued all day. I spoke with her for a few minutes, when she told me she loved me lots and was hoping that tomorrow would be better.
Amen
I realized that though I was trained as a "scientist" (that's what that whole MS degree was about), I rely completely on anecdotal evidence when it comes to my life. I probably shouldn't be admitting this, as I do hope to build my practice and would love all the readers of this blog to someday hire me :-) Throughout this whole process, I have avoided internet cancer research like the plague. WebMD is notorious for making people crazy, but I haven't wanted to read any journals or research. But I crave case studies. I thrive hearing people's individual stories. Definitely the uplifting ones, the stories of patients who lost their vision, then got it back, of a Stage IV diagnosis nine years ago. But also people's tragedies. I don't mind investigating it in single servings. I devoured My Year of Magical Thinking and am waiting very impatiently for The Long Goodbye, where a poet chronicles her experiences with grief after her 55 year old mother dies of cancer (April 16th). I don't want to hear the statistically significant reports. I would speculate on that, but that's how I live my life. I don't research electronics to buy, I ask friends for a recommendation. I don't compare products or weigh pros and cons, I ask one or two people I trust and do what they suggest. So when the nurse practitioner asked if we wanted to know Mom's updated prognosis, I really didn't care. Up to this point, everything is a mystery-I think Dr. C. was a little surprised that the CSF is still cancer free. Getting an official prognosis isn't meaningful to me, at least at this point. What do we do with that? What if they tell us she has 2 years and she doesn't? What if they tell us she has 6 weeks? What do we do with that information? We've already taken the lessons that life is short, enjoy your time, tell people you love them, blah blah blah.
The staff yesterday really wanted us to communicate our goals and plan so we can move forward. Good question. What are the goals? Is "keep comfortable" too defeated? Is "cure cancer" too ambitious? Both are true. My goal is to advocate the loudest and best I can for whatever Mom wants to do when she wants to do it. If she never wants to go home again, I will block the door. If she wants to go home by June, I will talk the ears off every person who can help make that happen. It's not my job to set goals for my parents, it's my job to help their voices be heard. And apparently I have appointed myself as the chief communicator to all of Mom's many fans. That's a role I cherish and am honored to hold.
I think I'm rambling and suspect that this blog post is slightly (or more than slightly) incoherent. I apologize and will go to sleep now.
Chemotherapy is taking its toll. While yesterday morning was decent, the afternoon deteriorated and today was just bad all day. Mom was nauseous, vomiting and extremely fatigued all day. I spoke with her for a few minutes, when she told me she loved me lots and was hoping that tomorrow would be better.
Amen
I realized that though I was trained as a "scientist" (that's what that whole MS degree was about), I rely completely on anecdotal evidence when it comes to my life. I probably shouldn't be admitting this, as I do hope to build my practice and would love all the readers of this blog to someday hire me :-) Throughout this whole process, I have avoided internet cancer research like the plague. WebMD is notorious for making people crazy, but I haven't wanted to read any journals or research. But I crave case studies. I thrive hearing people's individual stories. Definitely the uplifting ones, the stories of patients who lost their vision, then got it back, of a Stage IV diagnosis nine years ago. But also people's tragedies. I don't mind investigating it in single servings. I devoured My Year of Magical Thinking and am waiting very impatiently for The Long Goodbye, where a poet chronicles her experiences with grief after her 55 year old mother dies of cancer (April 16th). I don't want to hear the statistically significant reports. I would speculate on that, but that's how I live my life. I don't research electronics to buy, I ask friends for a recommendation. I don't compare products or weigh pros and cons, I ask one or two people I trust and do what they suggest. So when the nurse practitioner asked if we wanted to know Mom's updated prognosis, I really didn't care. Up to this point, everything is a mystery-I think Dr. C. was a little surprised that the CSF is still cancer free. Getting an official prognosis isn't meaningful to me, at least at this point. What do we do with that? What if they tell us she has 2 years and she doesn't? What if they tell us she has 6 weeks? What do we do with that information? We've already taken the lessons that life is short, enjoy your time, tell people you love them, blah blah blah.
The staff yesterday really wanted us to communicate our goals and plan so we can move forward. Good question. What are the goals? Is "keep comfortable" too defeated? Is "cure cancer" too ambitious? Both are true. My goal is to advocate the loudest and best I can for whatever Mom wants to do when she wants to do it. If she never wants to go home again, I will block the door. If she wants to go home by June, I will talk the ears off every person who can help make that happen. It's not my job to set goals for my parents, it's my job to help their voices be heard. And apparently I have appointed myself as the chief communicator to all of Mom's many fans. That's a role I cherish and am honored to hold.
I think I'm rambling and suspect that this blog post is slightly (or more than slightly) incoherent. I apologize and will go to sleep now.
Good News
AYNSLEY:
Dr. C. emailed Dad last night with the results of the CSF analysis. Despite nearly 6 weeks of no chemo therapy, Mom's cerebral spinal fluid remains cancer-free.
Boo-yah!
Dr. C. emailed Dad last night with the results of the CSF analysis. Despite nearly 6 weeks of no chemo therapy, Mom's cerebral spinal fluid remains cancer-free.
Boo-yah!
Thursday, April 7, 2011
4.7.11
AYNSLEY:
The social work staff thought that since the door to Mom's room is closed all the time, she didn't want them to come in and do their job.
The door is closed all the time because the hallway is bustling: it's noisy with staff and patients, and it smells like food, cleaning supplies or dust, depending on the time of day and what construction they're doing (oh, yes, I may have failed to mention this, but they are installing central air conditioning and drilling throughout the day). Since Mom can't see, her hearing is sensitive, and a noisy hallway is distracting and disruptive. She has always been sensitive to smells (a trait I inherited) and now with the medications and cancer, she's extremely sensitive. So, food or chemical smells are not welcome.
Whenever any nursing or therapy staff come in, they knock and come in. We always greet them politely if we don't know them or warmly if we do, Mom especially. So, I call bullshit on the closed door excuse. I understand that everything in every business is run by human beings, and therefore, imperfect. There are things in my job that I do poorly or neglect completely until someone points it out. But I try not to have BS excuses. I own my mistakes. I respect others who own theirs.
Our nurse practitioner, who I adore, owned the medication miscommunication. She told us she should have included that in her discussion two months ago about what our policy covers and when things expire. Though I suspect that she honestly didn't know-she's been completely forthcoming about everything else. I don't think she overlooked it, I think she simply didn't know. And she owned that and apologized. And now the staff is looking for ways to negotiate with Mom's insurance to see if there are some things Dad can order himself. There may not be, but at least they're trying.
This is all very expensive. I can not even fathom how someone without insurance could handle something like this. It's stressful for my family, but for someone else, it could be completely devastating. I can't imagine having to go through the heartbreak of watching your loved one suffer, then losing your house, or your child's education, or your job on top of everything else. Which reminds me that we have all been so lucky to have our work support us-my boss allows me to work from Seattle and fly back and forth-I could not have asked for a better support system. And we were extremely fortunate (ie, we had crazy connections) to get Mom into such a great facility in the first place. This afternoon when the social workers and nurse practitioner met with Dad and me, someone asked about our family network. But she asked in a funny way: "You don't have much family here, right? How would you manage when Mom went home?" And Dad starts listing: "I have two brothers here, my brother in law is here, my son is here, and we have infinite friends who have all stepped in to help in so many ways. Aynsley's in New York, but that's it." And she sort of regrouped and said that changed things a lot, and we could start being trained to administer medications.
I'm SUPER excited to learn all of that. IVs, catheters, syringes...anytime I can feel useful and give Mom medications that she doesn't gag on is awesome by me.
Mom really felt horrible all day today. She couldn't attend the meeting because she was too nauseous and actually stayed in her room by herself, clutching the call button, for that hour. And when I called a couple of hours later for my daily check in, she was too sick to talk. She just passed on an "I love you" through my dad and continued to try to sleep. I'm glad she doesn't have another chemo treatment for two weeks and hope that she'll be stronger and feel better in a couple of days. The mantra I keep over and over in my head is "quality of life over everything else" and it's so hard to watch her struggle with the chemo side effects. All I can do is choose to believe that a few of these rough days lead to more of the good ones. That may be naive, but that's my choice. I choose to believe in healing, in fighting and in hope.
The social work staff thought that since the door to Mom's room is closed all the time, she didn't want them to come in and do their job.
The door is closed all the time because the hallway is bustling: it's noisy with staff and patients, and it smells like food, cleaning supplies or dust, depending on the time of day and what construction they're doing (oh, yes, I may have failed to mention this, but they are installing central air conditioning and drilling throughout the day). Since Mom can't see, her hearing is sensitive, and a noisy hallway is distracting and disruptive. She has always been sensitive to smells (a trait I inherited) and now with the medications and cancer, she's extremely sensitive. So, food or chemical smells are not welcome.
Whenever any nursing or therapy staff come in, they knock and come in. We always greet them politely if we don't know them or warmly if we do, Mom especially. So, I call bullshit on the closed door excuse. I understand that everything in every business is run by human beings, and therefore, imperfect. There are things in my job that I do poorly or neglect completely until someone points it out. But I try not to have BS excuses. I own my mistakes. I respect others who own theirs.
Our nurse practitioner, who I adore, owned the medication miscommunication. She told us she should have included that in her discussion two months ago about what our policy covers and when things expire. Though I suspect that she honestly didn't know-she's been completely forthcoming about everything else. I don't think she overlooked it, I think she simply didn't know. And she owned that and apologized. And now the staff is looking for ways to negotiate with Mom's insurance to see if there are some things Dad can order himself. There may not be, but at least they're trying.
This is all very expensive. I can not even fathom how someone without insurance could handle something like this. It's stressful for my family, but for someone else, it could be completely devastating. I can't imagine having to go through the heartbreak of watching your loved one suffer, then losing your house, or your child's education, or your job on top of everything else. Which reminds me that we have all been so lucky to have our work support us-my boss allows me to work from Seattle and fly back and forth-I could not have asked for a better support system. And we were extremely fortunate (ie, we had crazy connections) to get Mom into such a great facility in the first place. This afternoon when the social workers and nurse practitioner met with Dad and me, someone asked about our family network. But she asked in a funny way: "You don't have much family here, right? How would you manage when Mom went home?" And Dad starts listing: "I have two brothers here, my brother in law is here, my son is here, and we have infinite friends who have all stepped in to help in so many ways. Aynsley's in New York, but that's it." And she sort of regrouped and said that changed things a lot, and we could start being trained to administer medications.
I'm SUPER excited to learn all of that. IVs, catheters, syringes...anytime I can feel useful and give Mom medications that she doesn't gag on is awesome by me.
Mom really felt horrible all day today. She couldn't attend the meeting because she was too nauseous and actually stayed in her room by herself, clutching the call button, for that hour. And when I called a couple of hours later for my daily check in, she was too sick to talk. She just passed on an "I love you" through my dad and continued to try to sleep. I'm glad she doesn't have another chemo treatment for two weeks and hope that she'll be stronger and feel better in a couple of days. The mantra I keep over and over in my head is "quality of life over everything else" and it's so hard to watch her struggle with the chemo side effects. All I can do is choose to believe that a few of these rough days lead to more of the good ones. That may be naive, but that's my choice. I choose to believe in healing, in fighting and in hope.
Wednesday, April 6, 2011
4.6.11
AYNSLEY:
Good things today:
Good things today:
- Dr. C. was back to administer chemo and was able to draw some CSF from the O'Maya Reservoir. This means that there's no need for a spinal tap
- Both types of chemo were given today and Mom didn't have her usual headache from the intrathecal
- A meeting has been scheduled for tomorrow afternoon with the nurse practitioner and social worker to discuss the moving forward plan and options
- Dr. C. would like to add platinum to Mom's treatment plan; this has been shown to be a beneficial treatment when combined with Taxol for triple negative breast cancer
- Mom had pad thai for lunch
- In addition to the insurance coverage running out, we found out today that medications aren't covered. This is due to KGH using a pharmacy that isn't simpatico with Mom's insurance. Part of the meeting tomorrow will be to see if Dad can order the meds from a different pharmacy and bring them in
- Insurance continues to be murky to navigate. We're learning some more about what isn't covered and some things are just completely contradictory and confusing
- In order to start the platinum therapy, Mom needs to eat more and get stronger
Tuesday, April 5, 2011
4.5.11
AYNSLEY:
Today seemed slightly better. For starts, Mom was awake when I called. But she seemed alert, too; discussing thank you gifts still owed to friends, happy I made plans with my NY relatives.
Tonight we had a cute family conference: Mom and Dad on speaker phone in Seattle and Gary and me on speaker phone in Brooklyn. I love that my parents want to talk to Gary and I love that Gary wants to talk to my parents. I was thinking tonight that Gary and I both did pretty awesome in the in-law department. Not only in the blood relatives; the extended friend network is pretty unbelievable, too.
Mom's insurance coverage in the nursing home is finished. It covers only 60 days, so now my parents are paying out of pocket for room, board and medical care. If Mom wants an appointment with a physical therapist or occupational therapist, they need to pay extra for it. So today Mom worked with a PT assistant. I'm not sure if that's covered under Medicare or it's just cheaper, but that's the new moving forward plan. Mom assured me that she could make an appointment with any of her regular therapists whenever she wanted to, but I'm under the impression that those are going to be less frequent. Which really is fine. She hasn't been feeling well enough to work out anyway, so it's ok that the sessions are sporadic. She's still walking to the bathroom a few times a day and doing some bed exercises. She gets leg rubs and back rubs all the time from friends and family. In all honesty, I was just happy she was well enough to do any therapy today. She walked and rode the bike, which is great. Anytime she's out of bed and not completely nauseous is great.
Tomorrow her chemo appointment is at 8:40am. I'm still not sure which treatments she's having or if she'll need a spinal tap also, but we'll find out tomorrow. In any case, it's an early morning for what will surely be another long day.
Today seemed slightly better. For starts, Mom was awake when I called. But she seemed alert, too; discussing thank you gifts still owed to friends, happy I made plans with my NY relatives.
Tonight we had a cute family conference: Mom and Dad on speaker phone in Seattle and Gary and me on speaker phone in Brooklyn. I love that my parents want to talk to Gary and I love that Gary wants to talk to my parents. I was thinking tonight that Gary and I both did pretty awesome in the in-law department. Not only in the blood relatives; the extended friend network is pretty unbelievable, too.
Mom's insurance coverage in the nursing home is finished. It covers only 60 days, so now my parents are paying out of pocket for room, board and medical care. If Mom wants an appointment with a physical therapist or occupational therapist, they need to pay extra for it. So today Mom worked with a PT assistant. I'm not sure if that's covered under Medicare or it's just cheaper, but that's the new moving forward plan. Mom assured me that she could make an appointment with any of her regular therapists whenever she wanted to, but I'm under the impression that those are going to be less frequent. Which really is fine. She hasn't been feeling well enough to work out anyway, so it's ok that the sessions are sporadic. She's still walking to the bathroom a few times a day and doing some bed exercises. She gets leg rubs and back rubs all the time from friends and family. In all honesty, I was just happy she was well enough to do any therapy today. She walked and rode the bike, which is great. Anytime she's out of bed and not completely nauseous is great.
Tomorrow her chemo appointment is at 8:40am. I'm still not sure which treatments she's having or if she'll need a spinal tap also, but we'll find out tomorrow. In any case, it's an early morning for what will surely be another long day.
Monday, April 4, 2011
4.4.11
AYNSLEY:
I know that springtime is supposed to be the time for renewal and rejuvenation. For the Kirshenbaums, we're just tired. When I spoke with my parents tonight, Mom had been sleeping for the past three hours. She woke up mid conversation, but requested to just listen; she was too tired to talk. Dad is exhausted, too-he's putting in longer hours at work and trying to be in two places at the same time, rushing to shower, rushing back to Mom's side. I am finally sleeping again, the last two nights easily ten hours. When I woke up this morning at 9am, I nervously checked in on myself. Why am I sleeping so much? Am I depressed? I think I'm really just tired. And just taking advantage of having days where I don't need to be accountable in the morning. And feeling horribly guilty that I have the luxury of sleep when my dad doesn't.
Gary asked me tonight what we can do to ease this burden, short of moving to Seattle. I don't know.
Mom has chemo again on Wednesday. We don't know yet who will be administering it. We don't know yet if she will have the intrathecal or just the systemic. We don't know yet if she will have to have a "lumbar punch." We don't know when the next MRI or CAT scan is scheduled, to check on the tumors, to see if they grew or spread during the time away from treatment. Everything is a big question mark. So Mom sleeps, drained of energy, courtesy of Taxol. And I sleep, shutting my windows to the sunshine and bird songs. And Dad doesn't sleep, listening for Mom's breathing all through the night.
I know that springtime is supposed to be the time for renewal and rejuvenation. For the Kirshenbaums, we're just tired. When I spoke with my parents tonight, Mom had been sleeping for the past three hours. She woke up mid conversation, but requested to just listen; she was too tired to talk. Dad is exhausted, too-he's putting in longer hours at work and trying to be in two places at the same time, rushing to shower, rushing back to Mom's side. I am finally sleeping again, the last two nights easily ten hours. When I woke up this morning at 9am, I nervously checked in on myself. Why am I sleeping so much? Am I depressed? I think I'm really just tired. And just taking advantage of having days where I don't need to be accountable in the morning. And feeling horribly guilty that I have the luxury of sleep when my dad doesn't.
Gary asked me tonight what we can do to ease this burden, short of moving to Seattle. I don't know.
Mom has chemo again on Wednesday. We don't know yet who will be administering it. We don't know yet if she will have the intrathecal or just the systemic. We don't know yet if she will have to have a "lumbar punch." We don't know when the next MRI or CAT scan is scheduled, to check on the tumors, to see if they grew or spread during the time away from treatment. Everything is a big question mark. So Mom sleeps, drained of energy, courtesy of Taxol. And I sleep, shutting my windows to the sunshine and bird songs. And Dad doesn't sleep, listening for Mom's breathing all through the night.
Sunday, April 3, 2011
4.3.11
AYNSLEY:
It's been a rough few days. Since Friday afternoon, the effects of chemo are creeping in. Mom described herself as "queasier than I'd like to be" today. She had her core visitors, which was wonderful, and was able to catch up on the phone with some emotionally close yet physically distant friends. But she didn't have an appetite and barely ate. She was very tired and took a lot of naps. She didn't do therapy. She is scheduled for chemo again this coming Wednesday. I hope that she spends the next few days less queasy than today, that today is the peak of the side effects and she gets stronger and hungrier before the second session kicks in and it all starts all over again.
It's been a rough few days. Since Friday afternoon, the effects of chemo are creeping in. Mom described herself as "queasier than I'd like to be" today. She had her core visitors, which was wonderful, and was able to catch up on the phone with some emotionally close yet physically distant friends. But she didn't have an appetite and barely ate. She was very tired and took a lot of naps. She didn't do therapy. She is scheduled for chemo again this coming Wednesday. I hope that she spends the next few days less queasy than today, that today is the peak of the side effects and she gets stronger and hungrier before the second session kicks in and it all starts all over again.
Saturday, April 2, 2011
4.2.11
AYNSLEY:
In trying times, we learn so much. We learn about ourselves, how we operate, what we can tolerate, what it takes to reach our breaking point and who we lash out at when reaching that point. We learn who our friends and family are, who runs away from challenges and who accepts them with arms open wide.
This is day 102 that Mom has been too sick to be at home. She had at least 10 visitors today. Some were the same people who come multiple times every week (and have since everything began). Some are people who drop by every month or so and keep in touch via the blog, email and cards. But every single one of them are the people who don't run away. Mom's yoga instructor checks in on a regular basis, always letting us know we're in her healing thoughts. Co-workers of hers and Dads (and even mine) continue to read the blog and send cards and meals; her elementary school friends email; one of her sorority sisters sends me the most beautiful stories of hope and love, keeping my cynical inner voice at bay during horrible times. I don't quite know which way it works: has my mother managed to collect a community of fearless, devoted people? Or does she bring out the braveness in them?
Gary and I talk a lot about what it means to be a family now. We know it doesn't mean sharing a name...so what does it mean? How do we create our own new family that's a reflection and an extension of the families that we were blessed to be born into? Or, what we really wonder, could we ever be loved and supported even a fraction as much as my parents are? What does that take?
I know that I often digress into weird hippie-speak about the seasons and karma. But, truly, this taking care of and being taken care of is really just energy exchange. Somehow, Mom has managed to receive the energetic love of seemingly everyone she has ever met and they all show up for her in countless ways. She is never alone. So, either she's racking up one heck of a karmic debt, or it's all already owed to her (I suspect the latter).
I am a control freak by nature. I have many rules and parameters and systems that get me through each day. I have learned so much in the last 102 days about control, mostly that I really don't have any. I have learned that plans don't mean much, that there's never a good time for some things and never a bad time for others. I have learned to practice patience. I have learned that screaming at doctors can't make them cure your loved one and that the screaming energy is far more effective if channeled into a healing massage for your loved one. I have learned that anger makes your stomach hurt and that fighting to get control of an uncontrollable situation is like trying to hold a fistful of sand in the ocean. The tide pulls it through your fingers and you end up empty handed every time.
I don't know where this story will take me. I can't know where it will take my family. Hearts will break, bank accounts will dwindle, plans will be broken and reassigned. But I do know that after 102 days, our friends and family are in it for the long haul. They'll still be by Mom's side at day 202 if necessary. And the best thing about that is that Mom knows it, too, and is able to trust it 100 percent.
In trying times, we learn so much. We learn about ourselves, how we operate, what we can tolerate, what it takes to reach our breaking point and who we lash out at when reaching that point. We learn who our friends and family are, who runs away from challenges and who accepts them with arms open wide.
This is day 102 that Mom has been too sick to be at home. She had at least 10 visitors today. Some were the same people who come multiple times every week (and have since everything began). Some are people who drop by every month or so and keep in touch via the blog, email and cards. But every single one of them are the people who don't run away. Mom's yoga instructor checks in on a regular basis, always letting us know we're in her healing thoughts. Co-workers of hers and Dads (and even mine) continue to read the blog and send cards and meals; her elementary school friends email; one of her sorority sisters sends me the most beautiful stories of hope and love, keeping my cynical inner voice at bay during horrible times. I don't quite know which way it works: has my mother managed to collect a community of fearless, devoted people? Or does she bring out the braveness in them?
Gary and I talk a lot about what it means to be a family now. We know it doesn't mean sharing a name...so what does it mean? How do we create our own new family that's a reflection and an extension of the families that we were blessed to be born into? Or, what we really wonder, could we ever be loved and supported even a fraction as much as my parents are? What does that take?
I know that I often digress into weird hippie-speak about the seasons and karma. But, truly, this taking care of and being taken care of is really just energy exchange. Somehow, Mom has managed to receive the energetic love of seemingly everyone she has ever met and they all show up for her in countless ways. She is never alone. So, either she's racking up one heck of a karmic debt, or it's all already owed to her (I suspect the latter).
I am a control freak by nature. I have many rules and parameters and systems that get me through each day. I have learned so much in the last 102 days about control, mostly that I really don't have any. I have learned that plans don't mean much, that there's never a good time for some things and never a bad time for others. I have learned to practice patience. I have learned that screaming at doctors can't make them cure your loved one and that the screaming energy is far more effective if channeled into a healing massage for your loved one. I have learned that anger makes your stomach hurt and that fighting to get control of an uncontrollable situation is like trying to hold a fistful of sand in the ocean. The tide pulls it through your fingers and you end up empty handed every time.
I don't know where this story will take me. I can't know where it will take my family. Hearts will break, bank accounts will dwindle, plans will be broken and reassigned. But I do know that after 102 days, our friends and family are in it for the long haul. They'll still be by Mom's side at day 202 if necessary. And the best thing about that is that Mom knows it, too, and is able to trust it 100 percent.
Friday, April 1, 2011
4.1.11
AYNSLEY:
I seldom love being wrong. But I am overjoyed to report that I was very wrong about how Mom would feel today. A few days ago, I predicted that "by Friday, she'll probably feel like crap" due to the return to chemotherapy. But today Mom still had an appetite and the strength to do physical therapy and occupational therapy. From the reports I've been getting, she seems stronger this week than the past couple of weeks. She did vomit after eating matzoh ball soup tonight, but she ate the entire bowl of it first. That's progress. For her to have an appetite at all is a victory.
Her digestion is a constant struggle. Being so sedentary, taking morphine, eating sporadically, taking blood pressure medication, and being nauseous all take a toll. It would be astounding if her digestion was anywhere near normal. But she has stomach pains a lot. My uncle brought her a heating pad that's a lifesaver; she uses it frequently and it helps with the belly discomfort. Last night she slept with the heating pad and by this afternoon her stomach was much better. The nausea hit tonight after dinner, but up until then was at bay. Again, for her to have the energy and stamina to do both PT and OT is fabulous-she wasn't able to do both since before my last visit and now it was two days in a row, after chemo.
Gary started a new job today (YAY!) and my parents called tonight to hear all about it. Gary wasn't home, though; he was performing in his improv show for the first time in almost two months. Mom wasn't really interested in talking to me, she just wanted to hear all about Gary's first day and to let him know they were thinking of him all day. I filled them in on what I knew, which wasn't much, and they told me they'd talk to Gary tomorrow. The whole conversation warmed my heart-that is exactly who Mom is. She remembers little details about people and then asks about them. She calls people on holidays, she asks me to send texts from her phone on birthdays, remembers who is going where on vacation and when they'll be back...that's classic my mother. That she's still the same person is such a relief to me. That even though so much has changed, I still have the same person in my life.
There have been many instances where I've felt role reversal, where I've stepped into the care taker position: feeding her, helping her stand, establishing rules, rubbing away her headaches the way she used to rub away mine...and yet she's still my mom. She's still asking the same questions she'd be asking if she wasn't in a hospital bed.
I am learning what this cancer means. I have been so focused on what it can take away. Today I got a glimpse of what it absolutely can't.
I seldom love being wrong. But I am overjoyed to report that I was very wrong about how Mom would feel today. A few days ago, I predicted that "by Friday, she'll probably feel like crap" due to the return to chemotherapy. But today Mom still had an appetite and the strength to do physical therapy and occupational therapy. From the reports I've been getting, she seems stronger this week than the past couple of weeks. She did vomit after eating matzoh ball soup tonight, but she ate the entire bowl of it first. That's progress. For her to have an appetite at all is a victory.
Her digestion is a constant struggle. Being so sedentary, taking morphine, eating sporadically, taking blood pressure medication, and being nauseous all take a toll. It would be astounding if her digestion was anywhere near normal. But she has stomach pains a lot. My uncle brought her a heating pad that's a lifesaver; she uses it frequently and it helps with the belly discomfort. Last night she slept with the heating pad and by this afternoon her stomach was much better. The nausea hit tonight after dinner, but up until then was at bay. Again, for her to have the energy and stamina to do both PT and OT is fabulous-she wasn't able to do both since before my last visit and now it was two days in a row, after chemo.
Gary started a new job today (YAY!) and my parents called tonight to hear all about it. Gary wasn't home, though; he was performing in his improv show for the first time in almost two months. Mom wasn't really interested in talking to me, she just wanted to hear all about Gary's first day and to let him know they were thinking of him all day. I filled them in on what I knew, which wasn't much, and they told me they'd talk to Gary tomorrow. The whole conversation warmed my heart-that is exactly who Mom is. She remembers little details about people and then asks about them. She calls people on holidays, she asks me to send texts from her phone on birthdays, remembers who is going where on vacation and when they'll be back...that's classic my mother. That she's still the same person is such a relief to me. That even though so much has changed, I still have the same person in my life.
There have been many instances where I've felt role reversal, where I've stepped into the care taker position: feeding her, helping her stand, establishing rules, rubbing away her headaches the way she used to rub away mine...and yet she's still my mom. She's still asking the same questions she'd be asking if she wasn't in a hospital bed.
I am learning what this cancer means. I have been so focused on what it can take away. Today I got a glimpse of what it absolutely can't.
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