AYNSLEY:
I send off June with anxiety and helplessness. Mom just came out of a successful surgery to remover her OMaya Reservoir. The neurosurgeon said everything went well and that though Mom has a minor infection, she wouldn't have been able to fight it off with a foreign body implanted in her brain. Now that it's out, the infection should clear up easily with the course of antibiotics that has already begun.
Six more weeks of antibiotics. This means that chemo can't resume for another six weeks. So Mom is going essentially cancer-treatment free for the next month and a half. It can't be helped, though it makes me even angrier that Dr. C. didn't coordinate better in the first place with the radiation oncology team.
That's part of the helplessness-nothing I feel or do today can change any past events. Nothing I think or say has any bearing on the outcome of Mom's disease. I can scream at the doctors (which I don't), I can throw tantrums in my apartment 3,000 miles away (maybe this happens from time to time), I can take a page out of Mom's book and accept each day and try to make it the best it can be (which I struggle so hard with, I am trying to live up to this set president and falling so pathetically short)...but most often I just do nothing and either listen on the phone or listen in person and wonder how much more she can take. I just get so sad that she's had to take so much already and knowing that there's surely more in store.
My parents will likely be staying at Overlake for another two days. Mom wasn't able to eat anything today due to the surgery this evening, (though she was able to negotiate one ice cube at some point this afternoon, which she savored, and if that doesn't break your heart, man...) but all day tomorrow and maybe Saturday she'll be able to enjoy the awesome Overlake menu. She and my dad also have the perks of the amazing Overlake staff, who we all adore and who are all exceptional.
Thursday, June 30, 2011
Wednesday, June 29, 2011
6.29.11
AYNSLEY:
That fluid seeping from Mom's surgical site yesterday started up again today, so my parents are headed back to Overlake tonight to see the neurosurgeon who put it in. It's possible that something somewhere around there is infected. The reservoir may need to be removed, which will likely happen tomorrow, though I suppose it's possible to happen tonight. In any case, they are sleeping at Overlake tonight.
This is where the time change kills me. It will be the middle of my night before they know anything.
Other than the mysterious seeping, Mom had a nice day. She worked out with the PT assistant, which means she got a lot of walking and stretching in, and she got caught up with some cousins, which she enjoyed. She and Ross slept in this morning and had a good night last night; she sounded well and not really concerned about the reservoir. I don't know if we all just put on a brave face in the midst of brain surgery or if she really is just accepting of everything at this point. Not that she ever wasn't-every surgery, every treatment, every poke and prod Mom welcomed without complaint and without hesitation. I'm too afraid of epidural medication to want to give birth at a hospital and Mom is gamely heading into brain surgery without fear. I still have so much to learn.
That fluid seeping from Mom's surgical site yesterday started up again today, so my parents are headed back to Overlake tonight to see the neurosurgeon who put it in. It's possible that something somewhere around there is infected. The reservoir may need to be removed, which will likely happen tomorrow, though I suppose it's possible to happen tonight. In any case, they are sleeping at Overlake tonight.
This is where the time change kills me. It will be the middle of my night before they know anything.
Other than the mysterious seeping, Mom had a nice day. She worked out with the PT assistant, which means she got a lot of walking and stretching in, and she got caught up with some cousins, which she enjoyed. She and Ross slept in this morning and had a good night last night; she sounded well and not really concerned about the reservoir. I don't know if we all just put on a brave face in the midst of brain surgery or if she really is just accepting of everything at this point. Not that she ever wasn't-every surgery, every treatment, every poke and prod Mom welcomed without complaint and without hesitation. I'm too afraid of epidural medication to want to give birth at a hospital and Mom is gamely heading into brain surgery without fear. I still have so much to learn.
Tuesday, June 28, 2011
6.28.11
AYNSLEY:
Mom had another great day today. After a fabulous PT session yesterday, including a pretty intense IT band massage, she worked hard again today, walking with minimal assistance and doing lots of stretches. Ross was able to hang out with her for most of the day and is spending the night with her tonight. I'm envisioning a sing along; Ross has his guitar and Mom likes to jam.
Yesterday Mom had some a small amount of fluid seeping from the site where her OMaya Reservoir was implanted-the doctor on call took a look and called Dr. C and the neurosurgeon who put it in in the first place-but is was a very little amount and it didn't bother her, cause a headache or look like an infection of any kind. She just isn't supposed to wear a hat if the surgical site is uncovered. The Kline team put some gauze on it, but Mom didn't even really miss having a hat. Her hair is growing in, fine and soft, and salt and pepper color. Some spots look gray, but some look dark brown. Kind of funny for a life long blonde. If it keeps growing in, she should have a cute little pixie style in a few months (with a couple of bald spots where maybe radiation was heaviest)
I flew home today. I had an interesting TSA fiasco (always happens at Sea Tac for some reason) which involved me being felt up not once but twice and testing positive for explosive material not twice but four times. Despite this, I was still on time for my flight and made it home by 5:30pm. I'm hoping I'm able to fall asleep at a reasonable EST bedtime tonight and be able to chat with Mom and Ross tomorrow morning.
Mom had another great day today. After a fabulous PT session yesterday, including a pretty intense IT band massage, she worked hard again today, walking with minimal assistance and doing lots of stretches. Ross was able to hang out with her for most of the day and is spending the night with her tonight. I'm envisioning a sing along; Ross has his guitar and Mom likes to jam.
Yesterday Mom had some a small amount of fluid seeping from the site where her OMaya Reservoir was implanted-the doctor on call took a look and called Dr. C and the neurosurgeon who put it in in the first place-but is was a very little amount and it didn't bother her, cause a headache or look like an infection of any kind. She just isn't supposed to wear a hat if the surgical site is uncovered. The Kline team put some gauze on it, but Mom didn't even really miss having a hat. Her hair is growing in, fine and soft, and salt and pepper color. Some spots look gray, but some look dark brown. Kind of funny for a life long blonde. If it keeps growing in, she should have a cute little pixie style in a few months (with a couple of bald spots where maybe radiation was heaviest)
I flew home today. I had an interesting TSA fiasco (always happens at Sea Tac for some reason) which involved me being felt up not once but twice and testing positive for explosive material not twice but four times. Despite this, I was still on time for my flight and made it home by 5:30pm. I'm hoping I'm able to fall asleep at a reasonable EST bedtime tonight and be able to chat with Mom and Ross tomorrow morning.
6.27.11
ROSS:
Sorry, I had one task for the blog, to write a quick recap of yesterday, and I got home last night and went straight to bed. Well, yesterday mom worked with her PT and she was walking down the hall with very very little support. Her PT had her arms out to catch my mom incase she fell, but other than that, it was all mom. She was walking great. Her PT has suggested my mom get a walking stick, believing that perhaps a great deal of her difficulty walking is a result of not knowing what's in front of her. Having a walking stick would allow her some extra guidance and confidence which may greatly increase her independence. We will see. Mom ate quite well yesterday too. I'm with mom now and asked her if she wanted to add anything.
FLYNNE:
We had a nice, very relaxing monday evening together, enjoying each other's company. Aynsley is on her way back home to New York it's always great to see her come, and hard to see her go. Today, I'm excited to listen to some guitar playing (I've got my guitar here today and we're about to start singing).
Sunday, June 26, 2011
6.26.11
AYNSLEY:
We celebrated Father's Day today, a week late. Dad golfed with Ross and his brother and nephew in the morning and early afternoon. The weather was perfect. Mom and I went to a meeting of a charitable contribution group that she's involved in. The ladies were nice enough to meet at the Kline instead of the regular location, and even nicer to let me sit in. I tried to respect the group and keep my mouth shut, but of course had little success. I read on a baby development site that from the time the fetus develops ears, its favorite sound is its mother's voice. Gary finds this hilarious and appalling-I may be slightly overly talkative (annoying) and tend to sing frequently and badly and Gary feels sorry for our child who will have a warped sense of a nice sounds. The group was lovely, though, and Mom really enjoyed "seeing" them again. Any and all semblances of normalcy are always appreciated.
Dad and Ross returned to the Kline late in the afternoon and we all trekked over to my parent's house for our Father's Day California Pizza Kitchen dinner. Mom's brother and his family joined us and we all sat at the dining room table, enjoying the meal and the company. And the fact that the Kirshenbaums were able to host a dinner party, in any capacity. Mom seemed to enjoy the field trip, but was pretty tired by 7:30pm and ready to go back.
Between the meeting this morning and leaving for home this afternoon, Mom slept. About 3 hours. She is noticeably more tired than the last time I was here, taking longer and more frequent naps and sleeping more during the night. I try not to worry and remind myself that fatigue is a very common side effect of radiation. And she has basically had radiation every 5 days out the 7 since I was here last. She also is having a slightly more difficult time walking to the bathroom and adjusting herself in the bed. Again, most likely due to being exhausted. I know this on an intellectual level, but it's hard to turn off that little voice in my head that wonders about the things we can't see. And worries.
We celebrated Father's Day today, a week late. Dad golfed with Ross and his brother and nephew in the morning and early afternoon. The weather was perfect. Mom and I went to a meeting of a charitable contribution group that she's involved in. The ladies were nice enough to meet at the Kline instead of the regular location, and even nicer to let me sit in. I tried to respect the group and keep my mouth shut, but of course had little success. I read on a baby development site that from the time the fetus develops ears, its favorite sound is its mother's voice. Gary finds this hilarious and appalling-I may be slightly overly talkative (annoying) and tend to sing frequently and badly and Gary feels sorry for our child who will have a warped sense of a nice sounds. The group was lovely, though, and Mom really enjoyed "seeing" them again. Any and all semblances of normalcy are always appreciated.
Dad and Ross returned to the Kline late in the afternoon and we all trekked over to my parent's house for our Father's Day California Pizza Kitchen dinner. Mom's brother and his family joined us and we all sat at the dining room table, enjoying the meal and the company. And the fact that the Kirshenbaums were able to host a dinner party, in any capacity. Mom seemed to enjoy the field trip, but was pretty tired by 7:30pm and ready to go back.
Between the meeting this morning and leaving for home this afternoon, Mom slept. About 3 hours. She is noticeably more tired than the last time I was here, taking longer and more frequent naps and sleeping more during the night. I try not to worry and remind myself that fatigue is a very common side effect of radiation. And she has basically had radiation every 5 days out the 7 since I was here last. She also is having a slightly more difficult time walking to the bathroom and adjusting herself in the bed. Again, most likely due to being exhausted. I know this on an intellectual level, but it's hard to turn off that little voice in my head that wonders about the things we can't see. And worries.
Saturday, June 25, 2011
6.25.11
AYNSLEY:
We had lovely Saturday. The weather cooperated and we were able to get some sun on the back patio. Mom felt well all day; she got a few good naps in and ate all three meals and snacks, though moderate amounts. I can't really tell if she's eating less than she did the last time I was here, but it seems like maybe her appetite isn't as strong. Though Ross mentioned that he's noticed the break in chemo has been good for her appetite. She always asks how she did when finishing a meal. "Did I do at least half?" or "I must be doing well with this, right?" Again, not being able to see if a hindrance; she has no idea how much food she should be getting through. For the average American, this is actually a wonderful practice: eat slowly until you're satisfied, not until the plate is empty. But in Mom's case, where she could really stand to double her calories, I wish she had a visual cue to shoot for.
I'm staying overnight with Mom again tonight and looking forward to it.
Friday, June 24, 2011
6.24.11
AYNSLEY:
And, boy, did Mom catch up on sleep today. Last night we slept with the windows open and listened to the rain fall all night. Mom was up once to pee, I was up four times. Mom slept until 8 or so, then we had a few hours to ourselves, which was great. Mom dozed on and off throughout the morning and early afternoon, then walked up and down the halls without a walker, with only the therapist gently touching her hip bones. She ate a great lunch, then slipped into a two and a half hour nap. When she finally woke up, she wasn't feeling great. She was a bit nauseous, achey and crampy, but that subsided by 9pm ish. She didn't eat any dinner due to the discomfort. But she still enjoyed listening to the banter of all of the visitors today, sometimes dozing to their stories, sometimes fully engaged in conversation.
I think she was just overtired from the weeks of radiation and travel. Today was really about rest and restoration, massages and stories. I'm glad I was able to be there for so many hours in a row.
And, boy, did Mom catch up on sleep today. Last night we slept with the windows open and listened to the rain fall all night. Mom was up once to pee, I was up four times. Mom slept until 8 or so, then we had a few hours to ourselves, which was great. Mom dozed on and off throughout the morning and early afternoon, then walked up and down the halls without a walker, with only the therapist gently touching her hip bones. She ate a great lunch, then slipped into a two and a half hour nap. When she finally woke up, she wasn't feeling great. She was a bit nauseous, achey and crampy, but that subsided by 9pm ish. She didn't eat any dinner due to the discomfort. But she still enjoyed listening to the banter of all of the visitors today, sometimes dozing to their stories, sometimes fully engaged in conversation.
I think she was just overtired from the weeks of radiation and travel. Today was really about rest and restoration, massages and stories. I'm glad I was able to be there for so many hours in a row.
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